When Xueli was a baby, her parents left her on the floor outside an orphanage. In China, albinism is considered by some to be a curse.
The rare genetic condition causes a lack of pigment which makes Xueli’s skin and hair very pale and also makes her extremely sensitive to sunlight.
But looking different led Xueli to her modeling career. Now 16, she has graced the pages of Vogue and led campaigns for top designers.
This is his story told to Jennifer Meierhans.
The orphanage staff called me Xue Li. Xue means snow and Li means beautiful. I was adopted at the age of three and moved to live with my mother and sister in the Netherlands. My mom said she couldn’t think of a more perfect name and she thought it was important to keep a reference to my Chinese roots.
When I was born in China, the government had a one-child family policy. You were extremely unlucky if you had a child with albinism. Some children, like me, were abandoned, others were locked up or if they were going to school their hair was painted black.
But in some African countries, they are driven out, their limbs can be cut off or they are killed. Wizards use their bones to make medicines because people believe that these can cure diseases, but of course that is not true, these beliefs are myths. I am lucky to have been abandoned.
My birth parents haven’t left any information about me, so I don’t know when my birthday is. But about a year ago I had an x-ray of my hand to get a better idea of how old it was, and the doctors thought 15 was about right.
I fell into modeling by accident when I was 11 years old. My mother was in contact with a designer from Hong Kong. She has a son with a cleft lip and she decided she wanted to make him some really fancy clothes so that people don’t always just look at his mouth. She called the campaign “perfect imperfections” and asked me if I wanted to take part in her fashion show in Hong Kong. It was an amazing experience.
After that I was invited to a few photo shoots and one of them was for Brock Elbank at his studio in London. He posted my portrait on Instagram. Model agency Zebedee Talent got in touch and asked if I wanted to join them in their mission to represent people with disabilities in the fashion industry.
One of Brock’s photos of me was featured in the June 2019 edition of Vogue Italia with Lana del Rey on the cover. At the time, I didn’t realize how important a magazine it was and it took me a while to understand why people were so excited about it.
In modeling, looking different is a blessing and not a curse and it gives me a platform to raise awareness about albinism.
The Kurt Geiger campaign is a great example of how they allowed me to show my difference. They allowed me to stylize and direct the shoot with my sister as the coronavirus restrictions meant the photographer couldn’t be in the studio. It meant I could express myself the way I wanted and I am really proud of the results.
There are still models that are eight feet two inches tall and skinny, but now people with disabilities or with differences are featured more in the media and that’s great – but that should be okay. Models with albinism are often stereotyped in the shoots to represent angels or ghosts and that makes me sad. Mainly because it perpetuates these beliefs that endanger the lives of children with albinism in countries like Tanzania and Malawi.
What is albinism?
Albinism affects the production of melanin – the pigment that gives color to eyes, skin and hair
People with albinism have a reduced amount of melanin or no melanin at all and often have very pale hair, skin and eyes.
The prevalence of albinism varies across the world. Around 1 in 17,000 people in UK have some form of albinism, NHS estimates
The term “person with albinism” is preferred over “albino”, which is often used in derogatory terms.
You can learn more about albinism from the United Nations Commission on Human Rights.
My albinism means that I only have 8-10% vision and cannot look directly at the light because it hurts my eyes. Sometimes if it’s too bright on a shoot I’ll say “Can I close my eyes or can you soften the light?” Or I’ll say “OK, you can take three photos with your eyes open with the flash and no more.”
At first they may think it’s difficult, but when they take the first photo they’re like “Wow” and they’re really happy with the results. My management tells customers, “If you can’t make it, you can’t have Xueli.” It is important for them that I feel comfortable.
People tell me that my visual impairment gives me a different perspective and I see details that others don’t. It also makes me worry less about the traditional view of beauty. Maybe because I can’t see everything correctly, I focus more on people’s voices and what they have to say. So their inner beauty is more important to me.
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I love modeling because I love meeting new people, practicing my English and seeing that people are happy with my photos. I want to use modeling to talk about albinism and say it’s a genetic disease, it’s not a curse. The way to talk about it is to say “someone with albinism” because being “albino” sounds like it defines who you are.
People tell me I have to come to terms with things from my past but I think I don’t. I believe you need to see what happened and understand why but not accept it. I will not allow children to be murdered because of their albinism. I want to change the world.
I want other children with albinism – or any form of disability or difference – to know that they can do and be whatever they want. For me, I am different in some ways but the same in others. I love sports and rock climbing and can do it just as well as anyone else. People might say you can’t do it right, but you can, just try it.
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