An insight into the daily life of someone with a disability is somewhat hard to find. While there are numerous chatterings online about feminism, gay and lesbian rights and racism, disability in all its forms is still somewhat kept behind closed doors. That’s why it’s so refreshing when people like Carly have the strength to be vulnerable and write about their challenges (both big and small) in everyday life.
Carly was born with a rare, severe, genetic skin condition called Ichthyosis which makes her skin red, scaly, itchy and painful. On her blog she explains how working in retail helped her take control of how others react to her appearance.
It was so hard being different. I wasn’t disabled enough to get the assistance I needed at school (which was a private space to apply my creams and to be able to sit indoors and read or do craft while the other students swam or played sport). But I was just disabled enough for my peers to call me names, leave me out of activities and avoid sitting on the seat I’d just sat on.
But it was when I turned 17 that things changed… It was the year I got a job, working at a department store for six hours a week after school. It was the year I learnt there was a wider world out there – and people were nicer than I’d experienced at school. Most importantly, I learnt how to handle questions and comments about my appearance in an assertive yet professional way.
And so today, I don’t think I need to turn every question, comment, stare or taunt into an opportunity for education. I don’t like how strangers feel they can intrude on my life by needing to know “what happened?” or why my face is red. Sometimes they ask me about my appearance before they even say hello. I get asked if I’m sunburnt, told I should use aloe vera and I notice people staring metres away.
I only wish they taught this kind of strength and self awareness at school:
My difference is a gift. It’s afforded me so many opportunities – and I’ve met some amazing people. And now when I look in the mirror, I am so happy with the way I look. I almost never want to blend in.
Dirty words. 