A friend told me that looking different is a pretty good dickhead filter. I've also found that barriers for people who look different or with disabilities are as much about other people's attitudes as a lack of ramps, captioning and sign language.
Last week I got a message via my online dating profile. I never actively seek out men on OkCupid, because I'm never quite what they expect ("you didn't tell me you were THAT red"), and there were those hideous experiences a couple of years ago, and the men who find me are always a little too unemployed or anti-social for my liking. But occasionally I get a message from someone. Very occasionally.
It was a nice first message, with many xs and os. He's a bit younger than me, and for a minute I felt very Samantha from Sex and the City. I made small talk with this guy - telling him I like writing, eating, seeing live music and travel. He asked me what I like to write - I sent him the link to my blog. And so he could read all about me, including why I look the way I do.
He replied: "I liked learning about your genetic disease, he told me. I still want to meet you."
Two things crossed my mind. I've been given a hesitant chance, and god, well meaning people can be condescending. He went on to say:
"I was hesistant but since i've gotten to know you, you seem like a very nice person. I can see why some people would be turned away but not me, i see your inner beauty. Well i was hesitant about sending you that first message. It took me a while to send the first message but i'm glad i did as i can see that you are a wonderful person inside and out."
While some parts of his message are very complimentary, it feels like a backhanded compliment. Having someone tell me they were hesitant of contacting me because of the way I look, that's not unexpected, but is quite confronting. And "I can see why someone would be turned away" by how I look - that is too. I experience this sort of stuff all the time, and while I'm used to it, doesn't mean it gets easier.
It felt as though he put his big girl panties on, and plucked up the courage to click on my profile, and then felt good about doing it. When he's realised I'm normal, just like everyone else (god I hate that phrase) he seemed to change his mind about what's worthy of love. And he didn't even understand why this comversation was hurtful.
While I dont think he meant to cause upset or offence, the conversation I had with this guy proved, once again, the limited awareness and poor perception of people who look different. And perhaps overall, a person who says this is a good person. But if they hesitate to say hello because of appearance, then maybe they're not the person for me.
Friends have experienced similar. Lauren, a friend who was overweight for a long time and has recently lost a considerable amount of weight, told me:
"When I lost weight I had a guy I used to see contact me and tell me 'gee I am spewing I dated you whilst you were fat especially now you are hot'" - adding "seriously do people have a filter between their pea brains and their mouths?".
Gina, who wrote for Ichthyosis Awareness Month, said:
"It's really weird to be made to feel like that. It's like, "Thanks but... No thanks." I have spent the better part of my life telling myself I am not much different in appearence from everyone else but that I am accepting of the fact that I do actually have drier skin than everyone else. And to have someone tell me that they basically had to look past my appearence to see how 'beautiful' I am is a not just a backhanded compliment, but a backhanded compliment that feels like a backhand in the face!"
I don't have a problem with talking about my condition - as you know I'm quite comfortable with it. What I do have a problem with is people being hesitant to start up a conversation with me because I look different, and when they do, feeling almost heroic for doing a good deed. I'm not keen on the "but you're normal like everyone else", nor people being curious enough to launch into a conversation about my appearance without the basic courtesy of saying hello.
Regarding the "looking past appearance" expression - this guy said to me that he was hesitant about my appearance but now he's looked past it, as though it's something that shouldn't be a part of my identity. As though it is something to actually look past - like you look past bad table manners and the price of airport food.
And on inner beauty - I'm a believer in inner beauty. It's about being a good person. But I don't think it should be a substitute for outer appearances when people don't quite know what to make of visible differences. Inner beauty is like normal is like just like everybody else.
It's ok for me to be proud of my identity and not to want to change how I look, and it's safe for others to come to get to know me. Tolerance and looking past disability seems like other expressions of not quite being comfortable with people with disabilities. (For more on "looking past", read Stella Young's wonderful letter to her younger self.) It's even ok for someone else to be proud of how I look, and not worry what others might think of them if they were to find someone who looks different attractive.
I don't want to be someone's second best, someone's heroic choice or the person they were too afraid of getting to know. Clicking on my online dating profile is not brave or doing a good deed.