As a continuation of our Keep On Being You series, we photographed Maya Spencer-Berkely for our #InYourOwnSkin campaign. Maya (@mbajsb) has the rare condition Epidermolysis Bullosa (EB) which affects 5,000 people in the UK and 500,000 people worldwide. Maya’s positive attitude and outlook on life inspire her to raise awareness of the condition through modelling. She is a true figure of inspiration and empowerment.
Tell us a bit about yourself
I’m Maya, I’m 20 and I’m from London and I suffer from Epidermolysis Bullosa (EB). It’s a group of rare genetic skin conditions which cause the skin to blister and tear at the slightest touch. There are three main types; Simplex, Dystrophic and Junctional. Far from merely a genetic condition, for me, Recessive Dystrophic EB is a reality of everyday life. Characterised by a lack of adhesion of the skin under the basement membrane, the severity of the condition varies widely. As well as affecting the skin, EB can also be the cause of other internal problems and infections that can drastically limit the lives of some sufferers.
Something that a lot of people don’t understand about EB is that the marks on my skin aren’t caused by the condition itself. The condition means that my skin is genetically fragile and very prone to blisters and wounds from slight friction. Thankfully the most recent studies relating to EB are trying to find ways to reduce to itch, so even though I’ll always have EB it won’t be as hard to manage.
What made you want to take part in the shoot today?
To spread awareness. I’ve tried to do this with modelling for quite a long time. I feel like this campaign will be well promoted and it will really help to promote what I’m trying to do.
What does body positivity mean to you?
Being comfortable, accepting all your flaws and whatever feels gross and horrible but it’s your body and you’ve got to love it. Treat it like a kingdom.
What is beauty to you?
I think beauty is happiness. It doesn’t matter if you think you’re ugly if you’re happy and comfortable because you glow. When you accept yourself you glow and to me that is beauty.
What does female empowerment mean to you?
Women of all shapes and sizes working together and supporting each other.
What advice would you say to your younger self?
Learn to accept it, don’t hide it. Don’t let stupid immature people make you feel uncomfortable. it took me so long to learn to love myself and I wish I’d done it and accepted it a lot sooner.
What album are you loving right now / what’s on your current playlist?
Due Lipa, IDGAF is my favourite song in the whole wide world at the moment.
What outfit would you wear for the rest of your life?
Probably my dressing gown!
What do you think the fashion industry could do more of to empower women?
I think currently we are on the way to empowering women a lot more than we used to. Showing REAL women and not giving everyone the idea that there is just one way to be.
What is one thing you’re most proud of?
Showing people my skin after years of pretending it isn’t there and hiding.
What are you working on for 2018?
Just spreading as much awareness as possible, this year is the year I’m going to nail it. There’s one charity called Debra, they’ve got one in every country. I’m sort of working with them at the moment, what I can do to help and be involved.