People whose appearance seems "unusual" to most, face increased attention and even harassment on a daily basis, both on social networks and offline. This is especially true of models whose appearance is always appreciated by others. Melanie Gaidos, a world famous model with ectodermal dysplasia, experienced bullying in elementary school, which later led to depression and suicidal ideation. Today she accepts herself, actively shares photos of her body and is not going to change her appearance. Ectodermal dysplasia is a rare genetic disorder that can manifest itself in hundreds of different ways, but primarily affects the development of skin, hair and teeth. We spoke with model Katerina Adams, who was diagnosed at birth, about self-love, the attention of others, the impact of the diagnosis on life, and how it has changed since the publication on Dazed.
Interview: Anna Eliseeva
As a child, I liked to grimace in front of a mirror with a comb or remote control, pretending that I was singing at a concert. I never dreamed of becoming someone specific, and even now, at twenty-five years old, I cannot say for sure who I want to be. I just love taking photos, dancing, dressing up and being the center of attention. But I believe that I will soon understand everything. For example, I have always been interested in science, and now I am drawn to medicine - I want to understand myself and understand why I turned out to be so interesting.
I was born with ectodermal dysplasia and Rothmund-Thomson syndrome. Doctors say it is very rare for these diagnoses to coexist in one person. When I began to be observed in adult clinics, they tried to ascribe other diseases to me, but I no longer pay attention to this. From birth, my eyelashes and eyebrows did not grow, from the age of twelve my hair and teeth began to fall out. The front teeth are now dentures. The nails changed color and fell off, the chest froze at the initial stage of formation - it looks like small specks. My small stature - one hundred and fifty-two centimeters - and the doctors also explain my thinness by genetic abnormalities. But all this does not prevent me from existing. I am alive - and this is the main thing.
Psychologically, I became uncomfortable as a teenager. The school days turned out to be the most painful - then they gave me the feeling that I was not like everyone else. Before graduation, I had only one friend who always stood up for me. I was often teased "premature", "bespectacled", "bald" and the like. They hurt physically and threatened.
I didn't tell my parents anything. In high school, at first I skipped because of this, but then decided to come - out of spite. On the one hand, I did not consider myself beautiful and wanted to be like the others: I drew eyebrows (which my classmates washed), glued eyelashes, wore wigs. Every morning I cried because I couldn't make a bun and hide my bald head. On the other hand, later my protest manifested itself just in appearance, I began to dress differently. Sometimes she would take several outfits to school and change at recess. She wore a bandage on her head, could put a dress on jeans, loved to carry Daddy's shirts and T-shirts, mixed things left over from the kindergarten with Daddy’s huge jacket. In general, I mixed styles as best I could. Closer to the age of seventeen, I became a rocker, inspired by the style of Marilyn Manson: making smokey eyes, wearing leather clothes, black glasses. It was as if I was screaming at everyone with my appearance and behavior.
I am grateful to my parents for their support, I understand how difficult it was for them themselves. Once I announced that I would not go to school because I had to draw my eyebrows. Then my dad found a woman who made me a tattoo - I still go with him. Mom sometimes helps with photos for Instagram. She herself is a photographer and instilled in me a love of the visual, taught me to see beauty in ordinary things: old shops, simple clothes. Once we walked and found huge tall reeds - I immediately saw myself in them in the form of an alien. I wanted to be naked, but my mother was against it, so she just bare the top. After graduating from school in my native Arkhangelsk, I went to the correspondence department in college and graduated to become a tourism and hotel business manager, then left to live in St. Petersburg, which I always dreamed of.
Already in St. Petersburg, I noticed that photographers and scouts were interested in me, and wanted to get into a modeling agency. Taking part in free filming only strengthened my love for working on camera. Agencies, however, refused me because of my height, so I got a fix idea: to break all stereotypes. First I wrote to Lumpen, and later its founder Avdotya contacted me. I was recently at Lumpen, as part of the agency I filmed for an interview with Dazed. I was completely covered in gold paint, I had to stand and dry for a long time - an interesting experience. But, in all honesty, I cannot name only one favorite shooting. I also always dreamed of acting in videos and films - everything is just ahead of me.
I am for any art, I love film photography, vintage style and dressing up. When I change my image, I seem to reincarnate into another person and adopt his mood. When I work, I feel like a fish in water. She gave me confidence in myself, thanks to her I shaved my head and opened up to the world - I posted a post on Instagram with breasts that do not exist. I was tired of hiding, I wanted people who get to know me to immediately recognize everything from the account. Before that, I felt constrained due to someone else's ignorance, and so a person can immediately decide whether he wants to continue communication. Honestly, it was not scary, I felt relieved.
I can't say that I am one hundred percent confident, but I definitely love myself more every day. In part, Instagram helps - I love this social network for the possibilities of dating and at the same time hate it, because it will once again remind you who you are, and in a negative way. They often wish me death and are constantly told that people like me should not reproduce - while this is written by adults. Before, I was worried, deleted comments and blocked everyone, but now I just try not to pay attention. People will always be attracted to those who are not like them.
Social media and the future
It seems to me that stigmatizing female nudity on social media is stupid if you think in terms of art. After all, people go to museums and see paintings by great artists, where you can find a lot of naked bodies, and this is very beautiful. Girls, however, "cover up" the nipples, just to post a picture. Instagram sometimes deletes my posts too, and I would like to create a site where I could upload full-fledged photos without any problems. Not only me, but many others who do out-of-the-box things do their bit to adopt a more varied appearance, which is very cool. We can say that we are expanding the consciousness of people in social networks. I really want this to happen not only in the virtual world, but also in the real one.
It seems to me that people should not be the same and follow generally accepted standards. We are all beautiful, the beauty is in our uniqueness. The only thing I did with my body was tattoos and eyebrow tattooing, but I don't plan to change anything anymore, everything suits me. Now I am inspired by unknown people who post incredible photos and performances on Instagram, whose accounts do not have a million followers and likes, but they have sincerity. I also follow my colleagues from the agency - Gosha Bergal, Stanislav Privalov, Avdotya herself. But among the models I like completely different and dissimilar people - from Sasha Luss and Alesya Kafelnikova to Yunia Pakhomova and Greta from Lumpen.
I like to do everything related to photography, fashion and art - I want these things to be in my life.After publishing in Dazed, I received many words of support and gratitude - girls still write to me with confessions that I give them self-confidence. There were, of course, negative comments, but they will always be. My life has not changed dramatically, but I myself have become even more confident. I want society to know about people like me and treat them calmly. Perhaps other people without breasts will respond - it would be interesting to know their experience.