Lucy Beall Lott addresses how having a visible disability changed and shaped the way she engaged with fashion.
I bought a beautiful dress to wear to a ball. It made me feel very sexy, I loved how it looked on me and with my skin tone. The only issue was that you could see my knees - and the scars that cover them. I wore it to the ball, had a great night with my roommate, but then as I was standing in line at a takeaway restaurant an older and very intoxicated man felt the need to inform me that my knees didn’t look nice. He said they must feel sore. It was a small comment; he said it more out of concern than to hurt my feelings, and I know those comments should have little effect on me. But, despite rationally knowing this, I haven’t shown my knees in public since. It doesn’t mean I won’t again, I absolutely will, but this small blow to my ego has made me think about the other unexpected ways in which having a visible illness manifests itself in day to day life, and, until recently, I never realised how much it caused me to think about the way I, and other sufferers, dress.
It is often an unconscious decision. I have scars on my knees, feet, and elbows, so I often find myself reaching for clothes that do not leave these areas exposed (winter is definitely my season). Many others with my condition do the same - hats to cover facial and neck scars, with the addition of makeup in some cases. Or - makeup and clothes that are bright and colourful, because if people stare at something some would rather they stare at deliberate choices in their appearance rather than scars we forget we have.
The effects of my condition, like many others, are very obvious. I often have blisters due to friction, which can mean different things for me. On a given day, I have visible blistering, many small and large scars, and even exposed bandages. I cannot wear open-toed shoes or certain heels due to the risk of blistering and the fragility of the scars on my feet. It is just not worth it. So, why would it be worth it for me to experiment with how I dress at all, if it seems I am so limited?
Before I even got university I realised that fashion could be a way in which I could control how the world sees me, because I cannot control scarring and never will be able to. I am lucky in that I live in a university town that loves to experiment with fashion; I can wear thigh high boots and mittens and no one will know I have scars on my knees and hands. And when I feel like bearing my scars? That’s alright too. Of course there will be people who stare, other students and children who don’t understand “booboos” and their well-meaning parents. But it is rarely met with disgust due to the diverse environment in which I live, and for that I am thankful.
When I arrived at university I decided I would try to be as positive about myself as I could, and part of that has been the way in which I present myself through clothing. I am met with many different reactions, the most confusing to me being comments about my courage for exposing these scars. I do not want to be considered brave for wearing a skirt or a tank top - other girls aren’t, so why am I?
When I instinctively reach for something with long sleeves, I try something shorter instead and every time how little my friends notice shocks me, because these scars are so bright and apparent, like an accessory I didn’t ask for. They are so apparent to me that it must be apparent to others, right?
Not always. And this is a reason fashion is so important to those with visible disabilities. We often don’t get to choose how we look. Sometimes I have more scars on my face than usual, or a wound on my knees, and that I cannot help; but what I can control is how I present myself to the world through the way I dress. And this is why diversification in the media is such an amazing tool for body positivity with regards to those with disabilities. As a child I felt I couldn’t wear certain clothes because of how they exposed parts of my illness I was not yet ready to show. Our cultures are getting much better about this, and I am so pleased every time I see a model in a wheelchair or with Vitiligo. It is a step in the right direction, but soon we need to show more conditions. Beauty and fashion do not belong solely to those who have clear skin and industrial-standard-sized bodies.
Until the representation we are exposed to improves, we will continue to wear lipstick as red as our scars and smile when they are used as an example. Change starts small, but positivity can create a chain reaction.