melanie gaydos' story
The 29-year-old opens up about living with ectodermal dysplasia and learning to love her own skin.
The photography in this article originally appeared in i-D's The Creativity Issue, no. 348, 2017.
Growing up with ectodermal dysplasia, a rare skin condition that made her pores, teeth, nails and minor bones form abnormally, Melanie Gaydos never really felt like she fit in. The 29-year-old model also suffers from alopecia, and is partially blind due to eyelash growth that scratched her eyes as a kid. But she never let that stop her. Totally fearless, over the years she's rejected various forms of enhancement such as dentures and wigs, choosing instead to embrace herself just as she is. Despite initially hating having her photo taken, today she's one of the many models challenging societal ideals of beauty, and has appeared in numerous titles from LOVE to i-D. Here she shares her incredible story.
"I can't remember when I first became aware of my condition. Of course, there were instances where I knew I was different from other people, but I didn't understand why or how. When I was about four years old I realised I didn't have hair like other children my age, so I started wearing a wig. It was weird and annoying and not very comfortable, I was happier without it. But as I grew older I started to have fun with different hairstyles and ended up with about forty different wigs. All of my peers knew I wore a wig (it's kind of obvious when your hair doesn't really grow or change) so I just decided to have fun with it.
I didn't really understand what my medical condition, ectodermal dysplasia, was up until about middle school when I decided to do a biology report about my genetic disorder. I was always in and out of doctor appointments and hospital visits, but I never really understood why I had to go or what it was that I was born with.
Growing up in Southern Connecticut, the biggest challenge I've had to overcome is simply just accepting who I am and this is something I still work on to this day. In 2010 I moved to New York to pursue a bachelor's degree in drawing and fine art. There I met a lot of other creative and like-minded people. One of them was a commercial fashion photographer who also shot portraits of his friends in the NYC club scene. I loved his work and wrote to him. Eventually he asked me to sit for him.
I also started modelling on Craigslist and Model Mayhem, working with fashion photographers who wanted unique faces and individuals who didn't conform to societal ideals of beauty. I knew that I had a different image, and a strong sense of self, so I knew I would be able to make some money. But I never would have guessed that my little summer job or hobby could take me where it has today. Modelling has given me the power to create, transcend and experience beautiful opportunities in the world. My career highlight so far has definitely been shooting with Tim Walker for LOVE magazine and i-D. I love Tim so, so much and it is truly a pleasure to work with him.
The first time I felt beautiful was probably at my first proper photoshoot with photographer, Adrian Buckmaster in 2011. I felt free, strong, beautiful, vulnerable and accepted. But there are times, even today, when I don't feel beautiful. I recently met a girl with very bleached blonde hair, tanned skin and a large chest; something pinched me inside and I felt like how I did when I was younger, when I didn't fit into the popular crowd. It was silly. She's a sweet person, but I still have my insecurities when it comes to not looking a certain way.
As humans we all just want to be accepted; I feel very accepted and loved for who I am but I suppose there is a small part of me that doesn't want to be rejected. Growing up, I felt like there was a social divide between me and "them", the popular, beautiful girls who I could never look like. This is something I am always looking to transcend. Over the years I've become a lot more loving. Which is something I've never really experienced or known much about. I've learned to take care of myself, both physically and psychologically, and with that personal strength I am able to help share, create and embody my own truth in the world.
More and more, people are coming together to challenge previously accepted ideals of beauty. By eschewing these old norms and accepting who we are as individuals, we can change the "rules" that exist in society today. So take the time to learn about who you are and what you like and don't like. You don't have to be anyone, anywhere or anything you don't want to be. Realise that and don't be afraid to accept change. The fear of the unknown holds a lot of people back, there is so much power we each can hold -- it is time to start exercising that."
Melanie wears dress and top Molly Goddard. Rollneck vintage from Carlo Manzi. Hat Jacquemus. Choker Giuseppe Zanotti. Tights and socks Emilio Cavallini. Shoes Mansur Gavriel.
Dress, skirt, and bralette Rochas. Rollneck Carlo Manzi. Gloves Marques'Almeida. Hat Jacquemus. Shoes Mansur Gavriel.
Dress and pantashoes Balenciaga. Sleeves Marques'Almeida.
Top J. JS Lee. Coat, jumper, bra and skirt Miu Miu. Gloves Marques'Almeida. Pantashoes Balenciaga.
Dress No.21. Dress and shirt (worn underneath) Orla Kiely. Sleeves Marques'Almeida. Hat Jacquemus. Socks Falke. Shoes Mansur Gavriel.
Text Tish Weinstock
Photography Tim Walker
Styling Jacob K
Make-up Thomas de Kluyver at Art Partner using Chanel. Photography assistance Sarah Lloyd, Tony Ivanov and Harriet MacSween. Styling assistance Clemence Lobert, Flora Huddart. Make-up assistance Joel Babici. Production Jeffrey Delich. Production manager Steph Broom. Production assistance Leslie Borg. Model Melanie Gaydos. Special thanks to Wagon Wheels, Direct Photographic.