When Ksuel was young, his parents left him on the ground in front of the orphanage. In China, some consider albinism a curse.
A rare genetic condition causes a lack of pigment, which makes Xueli’s skin and hair very pale, as he is extremely sensitive to sunlight.
But a different look leads Sewell to a modeling career. Now 16, he has graced the pages of Vogue ներ leading professional campaigns.
This is his story, as it was told Jennifer Meyers.
The staff at the orphanage called me Hue Lee. Xue means snow, and Li means beautiful. I was adopted when I was three years old, and I lived in the Netherlands with my mother and sister. My mother said she could not think of a more perfect name; she thought she could mention my Chinese roots.
When I was born in China, the government applied a one-child policy to families. You would be very unlucky if you had a child with albinism. Some children, like me, were abandoned, others were locked up, or if they went to school, their hair was dyed black.
But in some African countries they are hunted, their limbs can be amputated or killed. Witch doctors make medicines from their bones because people think they can cure diseases, but of course this is not true, these beliefs are myths. I’m happy that I was left alone.
My parents did not leave any information about me, so I do not know when my birthday is. But about a year ago I had an X-ray of my hand to get a more accurate picture of age, Doctors thought 15 was right.
I accidentally modeled when I was 11 years old. My mother was in a relationship with a designer who was originally from Hong Kong. She has a son with a chapped lip եց decided that she wanted to design very luxurious clothes for her so that people would not always look at her mouth. He called the campaign “perfect imperfection” and asked if I wanted to join his fashion show in Hong Kong. It was an amazing experience.
After that I was invited to a few photo shoots, one for Brock Elbank in his London studio. He posted my portrait on Instagram. The Zebedee Talent modeling agency contacted me and asked if I wanted to join their mission to represent people with disabilities in the fashion industry.
One of my photos, taken by Brock, was featured in the June 2019 issue of Vogue Italia on the cover of Lana del Rey. I did not know what a great magazine it was at the time, and it took me a while to figure out why people are so excited about it.
Having a different look in modeling is a blessing, not a curse, it gives me a platform to raise albinism.
The Kurt Geiger campaign is a really good example of how they allowed me to show my difference. They let me shoot with my sister because the coronavirus restrictions meant that the photographer could not be in the studio. It meant I could express myself in any way I wanted, and I was really proud of the results.
There are still models who look like eight-foot-thin, but now people with disabilities or differences are more likely to be featured in the media և great, but normal. Models with albinism often have stereotypes about angels or ghosts in their filming, which makes me sad. Especially since it perpetuates the beliefs that endanger the lives of children with albinism in countries like Tanzania and Malawi.
What is albinism?
Albinism affects the production of melanin, a pigment that gives color to eyes, skin and hair
People with albinism have reduced or no melanin levels, often with very pale hair, skin, and eyes.
The prevalence of albinism varies around the world. The NHS estimates that one in every 17,000 people in the UK has some form of albinism.
The term “albino person” is preferable to “albino”, which is often used in a derogatory manner.
You can learn more about albinism at the UN Commission on Human Rights.
My albinism means that I have only 8% to 10% vision, I can not look directly at the light because it hurts my eyes. Sometimes, if it is very bright on the shoot, I will say. “Can I close my eyes, or can you soften the light?” Or I will say. “Okay, you can take three pictures when my eyes are open with a flash, no more.”
At first they may have thought it was difficult, but when they paint the first picture, they look like “Wow” – they are really happy with the result. My management tells customers: “If you can not agree that you can not have Xueli.” For them, it may be that I feel comfortable.
People say that my vision impairment gives me a different perspective և I see details that others do not see. It also makes me think less about the traditional look of beauty. Maybe because I do not see everything right, I focus more on people’s voices, what they have to say. So their inner beauty is more important to me.
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I like modeling because I like to meet new people, practice my English և see that people are happy with my pictures. I want to talk about albinism by modeling, to say that it is a genetic disorder, it is not a curse. To talk about it is to say “albino” because being “albino” seems to determine who you are.
People tell me I have to accept things in my past, but I don’t think so. I believe that one should see what happened, և understand why, but not accept it. I’m not going to admit that children are killed because of their albinism. I want to change the world.
I want children with albinism or any other disability or disability to know that they can do what they want. For me, I am different in some ways, but in some ways I am the same. I love sports և mountaineering, I can do it like anyone:. People may say you can’t do things, but you can just try.
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