00:00I was abandoned because of my albinism.
00:03You do not know where you came from.
00:05You do not know what your real name is,
00:07when your birthday is.
00:09It was hard for me to have albinism sometimes
00:12because you get, unfortunately, excluded.
00:15Today I'm celebrating Albinism Awareness Day.
00:18Thank you very much all for coming to this important event.
00:23Albinism is a genetic condition
00:25which is passed down by both of the parents
00:27to the child with albinism.
00:29Albinism causes me to have less pigment,
00:32so I do not have color in my hair and my skin.
00:36But most importantly, albinism is an eye problem.
00:41I cannot see depth.
00:43I am sensitive to light.
00:45I have nystagmus, wobbly eyes,
00:47and I see approximately eight to ten percent.
00:50Persons with albinism also have a higher chance
00:53of getting skin cancer.
00:55I was born in China, in Xuchang.
00:58At that time in China there was a one-child policy,
01:01and because I'm a person with albinism,
01:04I was abandoned because in China some people believe
01:07that albinism brings bad luck to their families.
01:12Dealing with being abandoned is, of course, very hard.
01:15You do not know where you came from.
01:17You do not know what your real name is.
01:19When your birthday is, you get an estimation of what your birthday is,
01:24and you get a name given by the orphanage.
01:28It's very hard, but it strengthens me in getting more life experience.
01:33Because my parents did this, they gave me strength.
01:36They gave me an opportunity to live in a country that is accepting persons with albinism.
01:44I think every teenager or every kid struggles sometimes with their identity.
01:49For me, it was figuring out how a person with albinism of Asian descent looks like.
01:55It was also important to stay in contact with that part of my roots.
02:00From the start that Xueli was with us,
02:03it was important for her to find out who she really is and to become herself.
02:10So we found that you're actually really good at sports and that you really enjoyed it.
02:14I think that helped you a lot to also find your own identity and things that you like doing.
02:21I adopted Xueli in 2007 when Xueli was three years old.
02:27I adopted her from China.
02:29So when I received the proposal of Xueli, I was only told that she had albinism.
02:36I wasn't told whether it would be a boy or a girl.
02:39They never tell you that.
02:41And then I had two days to decide on whether I could raise a child with albinism.
02:48I didn't know much, to be honest, about what albinism exactly was.
02:53So I really needed to look into that and teach myself a bit more.
02:58So my mother helps me to accept everyone from a young age.
03:02She educated me to see the positive and the beauty in people.
03:07And you can also see that when the light's very bright, that you close your eyes.
03:12But when it's darker in the room, you open your eyes immediately.
03:16And then I had beautiful sapphires.
03:18This is my first photo shoot.
03:20That's really amazing, yeah.
03:22I never wanted to be a model.
03:25I did not grow up in that world.
03:27I never surfed for some recognition on TV.
03:31There was not a lot of persons with a disability.
03:36When I was 12 years old, I did an interview in a big Dutch newspaper.
03:42And after that, people started to ask me questions.
03:45Do you want to model?
03:47So I joined a special agency for persons with a disability.
03:52So that I can also represent other persons who have a disability, who are searching for that recognition.
04:00To be honest, I did not know what Vogue was.
04:03I thought, okay, good, lovely newspaper or something.
04:08I did not know what it was.
04:09But then people told me, oh, Vogue is actually quite amazing.
04:13And I was like, oh, okay, well, great, thank you.
04:17Everyone is unique and everyone must play a part.
04:22Also in the media and also outside the media.
04:25You should not underestimate people because of their body image.
04:30Or you should not exclude persons because of their body image.
04:35Exclusion is painful.
04:37Beauty to me is very relative.
04:39I think beauty is more on the inside.
04:42It's very cliche, but I really believe that beauty is on the inside.
04:46About accepting each other.
04:49About no wars.
04:51About peace, freedom, equality.
04:53For everyone.
04:54I think that's the beauty.
04:57And I don't think the beauty you can find in magazines.
05:01Today I'm celebrating Albinism Awareness Day with my mother.
05:04And with the Global Albinism Alliance.
05:07And with the UN Independent Expert on Albinism.
05:11The Director General of UNESCO saw an article of me in the BBC.
05:16And then the Director General decides to designate me
05:21as UNESCO Group Ambassador for the fight against racism and discrimination.
05:25Well, we're almost there at the event.
05:27How do you feel about it?
05:28I feel very excited.
05:30It's an honor.
05:31It's a big responsibility.
05:33Ready?
05:34Yes.
05:35I can tell you what Albinism is today.
05:48But I can also show you a video.
05:50What Albinism is and how young people stand up for their human lives.
05:55Because I think it's important that we show how young persons stand up for their human lives.
06:02Persons with Albinism are discriminated against because of their disability.
06:07And not because of their ethnicity.
06:09Thank you very much for you all for coming to this important event.
06:18I feel pretty excited.
06:20The event went very good.
06:22Beauty is to me more on the inside that you are a kind person to everyone.
06:30And that you respect everyone's disability or disadvantage.
06:35My advice to everyone who struggles with their image.
06:40Know that you are unique.
06:43And that everyone should accept you.
06:46Just show yourself to the world.
06:48I am Shrelly.
06:49I have albinism and I am beautiful.
06:51I have albinism and I am beautiful.
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