00:00 My name is Svellia. I was abandoned because of my albinism.
00:03 You don't know where you came from, what your real name is, when your birthday is.
00:09 It was hard for me to have albinism sometimes, because you get unfortunately excluded.
00:15 Beauty to me is very relative. I think beauty is more on the inside.
00:20 Today I'm celebrating Albinism Awareness Day.
00:24 Thank you very much all for coming to this important event.
00:29 Albinism is a genetic condition, which is passed down by both parents to the child.
00:34 Albinism causes me to have less pigment, so I don't have colour in my hair and skin.
00:42 But most importantly, albinism is an eye problem.
00:46 I cannot see depth, I am sensitive to light, I have nystagmus, wobbly eyes.
00:52 And I see approximately 8 to 10 percent.
00:56 Persons with albinism also have a higher chance of getting skin cancer.
01:01 I was born in China, in Xuchang.
01:04 At that time in China there was a one-child policy.
01:07 And because I'm a person with albinism, I was abandoned.
01:11 Because in China some people believe that albinism brings bad luck to their families.
01:18 Dealing with being abandoned is of course very hard.
01:21 You don't know where you came from, you don't know what your real name is...
01:25 when your birthday is.
01:27 You get an estimation of what your birthday is...
01:30 and you get a name given by the orphanage.
01:33 It's very hard, but it strengthens me in getting more life experience.
01:39 Because my parents did this, they gave me strength.
01:42 They gave me an opportunity to live in a country...
01:46 that is accepting persons with albinism.
01:50 I think every teenager or every kid struggles sometimes with their identity.
01:55 For me it was figuring out what a person with albinism of Asian descent looks like.
02:00 It was also important to stay in contact with that part of my roots.
02:05 From the start that Shueli was with us...
02:09 it was important for her to find out who she really is and to become herself.
02:15 We found that you're actually really good at sports and that you really enjoyed it.
02:20 I think that helped you a lot...
02:22 to also find your own identity and things that you like doing.
02:27 I adopted Shueli in 2007, when Shueli was three years old.
02:34 I adopted her from China.
02:36 When I received the proposal of Shueli...
02:40 I was only told that she had albinism.
02:43 I wasn't told whether it would be a boy or a girl. They never tell you that.
02:47 Then I had two days to decide...
02:51 whether I could raise a child with albinism.
02:54 I didn't know much, to be honest, about what albinism exactly was.
02:59 So I really needed to look into that and teach myself a bit more.
03:04 My mother helps me to accept everyone from a young age.
03:08 She educated me to see the positive and the beauty in people.
03:14 You can also see that when the light is very bright, you close your eyes.
03:19 But when it's darker in the room, you open your eyes.
03:22 And then I have beautiful sapphires.
03:25 This is the first photo shoot. That's really amazing.
03:29 I never wanted to be a model. I did not grow up in that world.
03:34 I never searched for some recognition on TV.
03:38 There were not a lot of people with a disability.
03:43 When I was 12 years old, I did an interview in a big Dutch newspaper.
03:48 After that, people started to ask me questions.
03:52 "Do you want to model?"
03:54 So I joined a special agency for people with a disability...
03:59 so that I could also represent other people with a disability...
04:04 who are searching for that recognition.
04:07 To be honest, I did not know what Vogue was.
04:09 I thought, "Okay, good, lovely newspaper or something."
04:14 I did not know what it was.
04:16 But then people told me, "Vogue is actually quite amazing."
04:19 And I was like, "Oh, okay, well, great. Thank you."
04:23 Everyone is unique and everyone must play a part...
04:28 also in the media and also outside the media.
04:32 You should not underestimate people because of their body image...
04:36 or you should not exclude people because of their body image.
04:42 Exclusion is painful.
04:44 Beauty to me is very relative.
04:46 I think beauty is more on the inside. It's very clichƩ.
04:50 But I really believe that beauty is on the inside...
04:53 about accepting each other, about no wars...
04:57 about peace, freedom, equality for everyone.
05:01 I think that's the beauty.
05:04 And I don't think the beauty you can find in magazines.
05:07 Today I'm celebrating Albinism Awareness Day with my mother...
05:11 and with the Global Albinism Alliance...
05:14 and with the UN Independent Expert on Albinism.
05:18 The Director General of UNESCO saw an article of me in the BBC...
05:23 and then the Director General decides to designate me...
05:28 as UNESCO Goodwill Ambassador for the fight against racism and discrimination.
05:32 We're almost there at the event. How do you feel about it?
05:35 I feel very excited. It's an honour. It's a big responsibility.
05:41 Ready? -Yes.
05:43 I can tell you what albinism is today, but I can also show you a video...
05:57 what albinism is and how young people stand up for their human rights.
06:02 Because I think it's important that we show...
06:05 how young persons stand up for their human rights.
06:09 Persons with albinism are discriminated against because of their disability...
06:14 and not because of their ethnicity.
06:16 Thank you very much, you all, for coming to this important event.
06:24 I feel pretty excited. The event went very well.
06:29 Beauty is to me more on the inside.
06:32 That you are a kind person to everyone...
06:37 and that you respect everyone's disability or disadvantage.
06:42 My advice to everyone who struggles with their image...
06:47 is to know that you are unique and that everyone should accept you.
06:53 Just show yourself to the world.
06:55 I'm Shrelly, I have albinism and I'm beautiful.
06:58 I'm Shrelly, I have albinism and I'm beautiful.
07:01 I'm Shrelly, I have albinism and I'm beautiful.
07:05 I'm Shrelly, I have albinism and I'm beautiful.
07:08 I'm Shrelly, I have albinism and I'm beautiful.
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