"You are an albino": Models about life with this feature

We talk a lot about the features of appearance and how the most different people achieve the right to “visibility” - to be different, but to live a normal life. In albinism, a genetic pathology, the carriers of which are primarily distinguished by very fair skin and hair, since they are partially or completely lacking pigmentation, yet there is a special situation.

Current news about the life of albinos in African countries is terrifying: in Tanzania and Malawi, they are killed for ritual purposes (the first trial of such killings took place only in 2009). In Zimbabwe, the belief reigns that having sex with an albino woman eliminates AIDS. We still know very little about what constitutes a complete picture of this feature and how people who were born with it actually live. We tell that the science knows about it, and that the speakers of albinism themselves say.

Statistics say that pronounced albinism occurs in one of seventeen thousand people. The most common type of albinism is ocular and dermal, in which there is a lack of melanin pigment in the iris, hair and skin. Occasional ocular albinism occurs in which its owners acquire a darker shade of skin and hair with age, but have vision problems characteristic of albinism: nystagmus, strabismus, and astigmatism. Albinos are more at risk for skin cancer, with many carriers of partial albinism sunbathing a little.

Thermodependent albinism is also distinguished, in which a violation of pigment metabolism leads to the formation of very light areas on the body in the presence of hair pigmentation. In terms of the genetics of varieties of complete and partial albinism is much more - despite the fact that this feature is hereditary, in the modern world, albino children are often born to parents who do not have any signs of albinism and do not know that they can be carriers of the pathological gene .

Among Africans, albino children are born much more often than among residents of other countries — this is one out of three thousand people. It is assumed that this is due to the large number of closely related marriages on the continent. At the same time, it is really hard for people with albinism to live there: albino sacrifices, which seem to us medieval savagery, are still popular in some countries to this day. Last year, after the visit of the UN envoy Ikponvozy Euro, who has been acting as an expert on problems with people with albinism since 2015, the organization issued a detailed report on the situation of albinos in Malawi - these people were literally under threat of destruction due to hunting.

Since November 2014, seventy cases of albino killings have been reported in Malawi. The harassment of "vampires" in this country, which has been reported recently, is the most extreme example of how society is ready to destroy members of minorities, based only on their dissimilarity on the majority.

In another part of the planet, the situation is different, but is it so ethically immaculate? Carriers of albinism in Russia, Europe and the United States rarely lead a limited lifestyle, since modern medicine and cosmetics allow, although not completely, correcting the main problems: photophobia and falling visual acuity. In recent years, we have increasingly seen shooting with "translucent" light-skinned models, communities are flourishing on social networks, where fans gather with people with snow-white eyebrows and hair.

Model business willingly accepts people with albinism - they often have outstanding appearance, and their peculiarity does not entail problems that frankly interfere with working on the catwalk or on the set. Albinos have become especially in demand when a non-standard appearance appeared on the wave of popularity. And in 2012, entering the podium of the model with albinism of Diandra Forrest at Fashion Week in progressive Johannesburg became a loud social statement. But the question of whether it is appropriate to salute “inspiring inclusiveness” where people are literally endangered by their appearance remains open. Excessive enthusiasm also gives rise to a situation where albinism becomes a fashionable fetish: here admiration coexists with complete disregard of the objective difficulties of life with albinism.

Children with albinism are often subjected to school harassment, and adults prefer to dye their hair and eyebrows stubbornly to avoid unnecessary questions - outside of modeling, in a normal and often aggressive environment such stories are not uncommon. Meanwhile, modern medicine, speaking of the incurability of albinism and the inevitability of the problems associated with it, does not consider this feature dangerous to life. Moreover, it is precisely albinism that genetics perceive as the most trouble-free pathology: subject to the recommendations for careful sun protection and timely visits to an ophthalmologist, people with albinism lead a normal life and can choose their profession and hobbies on the same grounds as everyone else.

In Russia and the near abroad, people with albinism are also becoming more and more visible - the young inhabitants of social networks, born with this feature, themselves strive to dispel the myths about themselves. Alina from Minsk leads the youtube channel, where she often talks about albinism and answers questions. Popular model Nastya Zhidkova, working under the pseudonym Kimi, leads her instagram, where she uploads not only photos from filming, but also shows quite everyday shots. The state of affairs when people with albinism are not literally treated like white crows, for the time being, in a difficult future. But our heroes already perceive themselves primarily as unique people. That is the same as everyone else.

The dressBalenciaga, SV Moscow

I have partial albinism of the eye and skin group. My dad is the same as me and the blue-eyed mother, and my sister is blonde. Over time, about ten years old, she began to darken strongly and became dark blonde. It never happened to me, and all my life I remained white. And then I entered Moscow and met Kolya, another hero of this material, he called me to shoot - and that was how my modeling career began. Then I painted a lot, hid my appearance, drew myself eyebrows, arrows. Kohl said to me: "Why would you hide your appearance if you were born this way? You're an albino!" Then I asked my mother about it, and she confirmed. She said she did not want to hurt me.

I went to school when the fashion of a “sharp” eyebrow, tattoo, and all the girls were so dark and beautiful was in its heyday. I remember once I came to the school unpainted, and they told me that I looked like a transvestite, a horse, they started asking me where my eyebrows were - they constantly called me names because I had a long face and very bright eyebrows. I decided to just start painting, because thanks to this, people perceived me a little more adequately. Before leaving school, all my classmates thought I was bleaching my hair.

I came to modeling with a healthy attitude to my appearance - I can not say that it was this occupation that gave me confidence. When I studied at the university in the first year and still continued to be beautiful, I had a young man. After Kolya’s words — it was summer — I had just finished my eyebrow pencil, and I decided to look like it really is. I came to the university unpainted, and the guy left me, telling me that if he knew how terrible I was without makeup, I would not have met with me. Of course, I again heard the question of where my eyebrows are and if I had not shaved them off. Why do people react to the simple absence of eyebrows? Then I realized that the problem was not in me and not in my appearance, which I tried to hide all the time, but in people with whom I communicated at that time: they could not accept anything different from what they were used to. I began to communicate with photographers, I got on Wednesday, which pays much less attention to a person’s appearance. And it became much easier for me.

However, I know a couple of girls who fade their eyelashes, eyebrows and hair, trying to achieve absolute whiteness: they try to look like albinos, they like it and it seems stylish. But it cannot last for long: it is physically impossible to bleach so much without harm to the hair. Then they still return their normal color. Many are albinos with a positive interest. My young man, when he saw my photo, fell in love with me before our acquaintance - he has such a fetish, and he does not like cosmetics.

I used to know Nastya Zhidkova, saw her on instagram, often ached that I wanted to be like her, that I was not white enough, that I had a yellow shade of hair. But albinism is not only looks and not a reason for envy. This feature is accompanied by a hypersensitivity of the organs: I have persistent problems with mucous membranes and digestion, the skin irritates all the time, and wounds and inflammations heal for a very long time. I have no nystagmus, but one eye hardly sees. Another problem is photosensitivity. Often, in modeling work, you encounter a misunderstanding of clients. I worked in China with a blonde girl, and, apparently, I was again mistaken for a girl with bleached hair. I spent seven hours in the scorching sun, my capillaries in my eyes burst. It is hard to look at the sun, it is very painful, you literally cut your eyes. My skin burned very badly. Clients simply said that they were given a disabled model and they don’t want to pay for it - they didn’t imagine that it might just hurt a person to be in the sun. But now albinos are still easier to live than decades ago: there are much more opportunities to be an ordinary member of society.

Sweater Gosha rubchinskiySVMoscow

In elementary school, my parents took me to an ophthalmologist, and the doctor told them that I had photophobia and nystagmus. It manifests itself, for example, when I start to worry - my eyes start to run. I could not open my eyes to luminous devices and undergo similar procedures. Because of this, I was not fit for the army, and ophthalmologists said that this is albinism. Then I read a lot about it, and the only thing that fits me by description is thermally dependent albinism. My hair color changes quite often throughout the year, in winter it is a bit darker than in summer. There are several groups of albinism: the first, in which the integument is completely devoid of pigment, the second, in which there is partial pigmentation of the eyes and hair. Albinos may well have dark-blue green or blue eyes. Often I call myself just blond: after all, I have no obvious signs of albinism. I am even able to get a minimal tan in the sun without discomfort.

I started acting when I was fourteen, thanks to my friend photographer. I was too shy of too blond hair and eyebrows, I dyed my hair - and she noticed some “gray” roots and said that it would be cool if I grew my natural hair. I did just that: I stopped painting my eyebrows, failing my eyes, what I did, probably, from the fifth grade. Some model life began as a teenager: various photographers in Moscow, St. Petersburg, Kazan started shooting me, and I had a rather popular Tumblr. Katya and I together began to photograph the same guys as me, so we met both Nastya and Dasha. I myself considered albinism to be my peculiarity and I think that similar people should be supported. I filmed a lot, the number of proposals only grew, then I was invited to invite modeling agencies. I notice that a lot of attention is now riveted on albinos - and I like it. Much more comfortable than living in a society where you have to feel embarrassed about your appearance. There were a lot of top models, which lightened eyebrows and hair, and began to treat the "natural" albinos with great enthusiasm.

In work, one can often be confronted with misunderstanding. During studio shooting, when the photographer puts on a pulsed light, the flash constantly hits the eyes, and this affects and causes discomfort. The bright light on the shows is also difficult to endure: you reach the end of the podium, keeping your eyes open while you are being removed - this is almost unreal. It is very difficult to prove that this is not your whim, but the consequences of pain and inconvenience. I shoot myself, I already have a few short films, I take a lot of pictures - and I earn a living, and this does not bother me with albinism. Insufficiently sharp vision is easily corrected with glasses. Ophthalmologists warned that during my life my eyesight could drop to retinal atrophy, but you quickly get used to the difficulties and begin to consider them as the norm. Perhaps in the future I will be engaged in other, less exhausting activity. I want to try myself in something new, although even now I have a lot of good work.

I often meet guys with very blond hair, girls who do tattoo eyebrows for themselves - and I ask them not to do this, because it is worth giving a person a chance and a reason to prove himself real, and he will most likely understand how cool it is. I propose to insist on your own and be what you are - none of your friends have yet perceived this experience as negative. On the contrary, everyone is liberated and feels freer - and this helps to develop further.

The dress Dries van notenLeform

When I was about thirteen, I started working as a freelancing model. Photographers invited me, I went to anime festivals, I was photographed in images. Somewhere before the age of eighteen, I was photographed with friends, and then they began to invite me to more serious projects in private - I agreed to almost all the shooting, because it seemed interesting to me. It was very distracting from the school routine, and the experience and the result were unusual, and I was never shy about the cameras. When I was eighteen, a young man, whom I then met, showed me to a modeling agency. They really liked my appearance, and despite my short stature, they offered me a contract - they said that they would like to develop me in an image direction connected with social networks, like a mediality and model. I signed a contract, and we have been working for the fourth year.

In childhood there were a lot of problems associated with my peculiarity. I look really unusual for our society: there is a stereotype according to which blondes with blue eyes should be a common type, but in fact there are few such people. There are even fewer people with albinism. Of course, I was teased. In the 2000s, albinism was not yet “fashionable”, and if this is now perceived more positively, then when I was young, many clearly considered this a disease and a problem. Most of all there was trouble with vision: people were very annoyed that someone might have some not entirely clear features. Many have tried to hurt, probably because it is very easy. A person who sees poorly is easily deceived. If I perceived my appearance as something that simply distinguishes me from others, and I considered beauty as a subjective matter, then my eyesight really caused many complexes, and I cannot say that today I don’t have them at all.

Due to the fact that albinism has become a HYIP theme lately, many are beginning to imitate, trying to attract attention: they see beauty and purity in light skin and hair. I am neutral to albinism: after all, it entails poor eyesight, and this is not very pleasant. Fully live it interferes unequivocally. Even our state understands this and offers some benefits. In albinos, it is not that defects in appearance, they just always look specifically. If a person has a disproportionate face, then harmony is achieved due to the brightness of the eyebrows, hair and pigmentation in general; all the features of an albino look "naked". There are no shadows framing the face, you are like a blank canvas - and to many, unfortunately, this seems repulsive.

I did not encounter any great difficulties in my work: I was never refused if I asked for something and warned in advance. It happens just hard, like all models. Of course, it is difficult because of photophobia. On most shootings, it is sometimes difficult to open your eyes, both in studio and natural light. But we always acted with photographers by agreement. I understand that something can go wrong for the reason that people are bad. They just may not think about the specifics of albinism and do not compare my experience with theirs. I have very sensitive skin, and they rarely remove me in the sun, and if they do, they do it very carefully: they provide umbrellas and keep them in the shade.

Previously, I just liked to make beautiful pictures, and only a few years later, after talking to people who inspire me and whom I inspire, faced with the problems of others, talking to people in Russia and abroad, meeting people with disabilities, I realized that the happiness that a person chooses for himself does not greatly depend on appearance. My message for other people was the following: it doesn’t matter how you look, from what country you are and what you like, if a person is happy in his shell - this is important. Работа в моделинге даёт понять, что мода навязывает стереотипы, которые очень быстро меняются. Альбинизм ещё лет семь назад был не просто недостатком, а в первую очередь отклонением и генетической мутацией - а сегодня положительного отношения больше. Всё-таки внешность играет минимальную роль в ведении полноценной и интересной жизни.