Albinism an inherited genetic condition
that reduces the amount of melanin pigment formed in the skin hair or eyes. The two principle types of albinism
in humans is oculocutaneous affecting the eyes, skin, and hair, and
ocular affecting the eyes only. Albinism knows no boundaries and occurs
in all racial and ethnic groups of people throughout the world and can affect
nearly any species from land and Marine mammals, to birds, fish, reptiles,
and insects, or even plants. Dangerous superstitions in some parts
of Africa have perpetuated the belief that body parts of people with
albinism can transmit magical powers, which has been exploited by witch doctors
who use body parts as ingredients in rituals and potions with the claim that their
magic will bring prosperity or good luck. In terms of occurrence, approximately
1 in 20,000 people have some form of albinism in Europe and
North America, with rates as high as 1 in 3,000 in
some regions of Africa. My name is Anthony Padilla and today,
I'm going to be sitting down with people with albinism to learn the truth about
this heavily misunderstood condition. Have these people with albinism been
able to fully embrace their rare condition or does the outright ignorance
of people around them cause them to feel immensely
insecure and isolated? Hello, Thando. Hi, Anthony. How are you? Aldo. Hi, Anthony. Semme. Hey, what's going on, man? Thank you so much for coming on here and
teaching me about the world of albinism. Absolutely. Thank you for having me. What do you consider
yourself, someone with albinism, someone who simply
lacks pigmentation? Just person with albinism. Someone who's really white. [laughs] Just a human being. I have to explain to people
that it's not a race and it's not a disease either. It's weird. What does having albinism entail? Albinism is a genetic occurrence. It happens in all races. Usually, when two people have a
recessive gene, there is a chance that they could have a child with
albinism and that would mean that you have a lack of pigmentation
in the skin, hair and eyes. The thing about pigmentation is
that it has a certain consequence and eyesight as one of them. You lack pigmentation even in the nerves
that actually assist with your eyesight. You start not only being sensitive
to light, you also become short-sighted and also your skin
is more susceptible to skin cancer. Vison, that's the biggest thing. It's difficult to do things
that people wouldn't think that it'd be difficult to do. It's very hard to see texts. If I read a text that's way too
long, after a certain period, my eyes literally get tired. It's actually painful. It's not just a matter of
like, "Oh, I can't see."? Your eyes will get tired and then
it'll make you fatigue as well. It was hard staying up in school
because I'd be struggling to try to see the board and stuff. It's a lot of little stuff,
man, that is just difficult. What is the most annoying
question you get just to make sure I don't ask you it? I live in Indonesia and when people
see me with my grayish-blue eyes and white skin, blondish hair, they ask
me if I'm from the West if I'm Caucasian. They like off the bat try
to speak English with me. I'm just like, "No, I
can speak our language. I can speak in Indonesia." You just have people assuming
because your skin's light that you are just an English native speaker? Exactly. The constant repetitive questions. It wasn't necessarily the question
or the content of the question. It was the frequency of the question. "Are you albino?" That's the most annoying one. It's like, "Yes." Do people think they're going
to get a different answer? This is what I think
goes through their head. "Oh crap. That's an albino." Then they go, "Wait, is it?" Then they goes, "Oh, he's staring at me. Are you albino?" I think that's literally what
goes on through their heads. It's like someone has no filter. It just falls out of their mouth. When I was growing up, I never really
heard the term person with albinism. I only ever heard albino person. How do you feel about the word albino? Is that offensive to you? Do you feel like it's dehumanizing? It's just the delivery like anything
else because if someone doesn't know how to address me or address what I am,
then I can [?] through that and see it. If someone's just being a dick, you
can know when someone's just being-- You'd need more so context and tone. It used to happen a lot where
people were just a-holes. Now, more people are
just curious or they just say, "Man, that's cool," or
they don't even believe. They're like, "Oh, y'all are real?" They thought that you were just part
of some ancient mythology or something? Exactly. They were like, "I didn't
know that y'all are real." The term albino is the term that's
predominantly used, but actually, in my opinion, it's a derogatory
term and a great deal of people with albinism don't take kindly to it. The reason for it really is
that an albino can be an animal. it can be a plant, and when it's
used to refer to a human being, then obviously, it
misconceptualizes-- Dehumanizes you in some sense. No, never albino. Scratch that one out. Never albino. Scratch that out of your lexicon. Never again. [music] Was there a moment when you first
realized that you were different than what society would deem normal? It was when I went to public
school for the first time, I was in the lobby, and my mom
was checking in to the public school. I sat down by this kid, and
this kid, he tells his mom, "Mom, am I going to
get the albino disease?" How did that even get
implanted in their head? It threw me for a loop because,
in my mind, I was like, "Is he?" [laughter] "You tell me what your mom tells
you because I want to know as well." "Is it contagious?" Then I just knew then, "Okay,
this may be a problem." Then every single day from then
it's like, you walk past the hallway and then you have people like, "I
think this's the new albino kid." Oh. My mother didn't give me my
school uniform for the first day, and she told me, she sat down with
me and she said, "I promise you, I'm going to get your school uniform." and I was like, "Bomer." We get to school. I could just feel, my heart is just
like, " [sound] " I'm so excited. Now I sit there, and I just hear
someone say, "Don't sit next to her." Wow. I'm like, "Next to who? Don't sit next to who?" "Who's her?" Exactly, like, "Who are
we not sitting next to?" Then they move away. I remember thinking to
myself, "Dammit, I knew it. I should have worn my school uniform." Of course, it was the uniform problem. Of course, the school
uniform was not the problem. I'd say that that was the time when I
started moving from having a skin that was neutral to a skin that weighed,
and all of a sudden had consequences. Before we continue learning
about the world of albinism-- I was conditioned to feel that's normal. It's normal for me to get picked on, so
I didn't fight back, I didn't even report, I didn't do anything. I just lived with that. I'd like to thank our sponsor,
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the web from anywhere in the world. Now, back to the world of albinism. Can you recall any big moments
in your life that were clearly shaped by having albinism? I remember even my
mother bought me a doll, it was a black
doll with kinky hair. At that time, I never looked
at that doll and thought, "Oh, this doll doesn't
look like me, oh." that never quite happened in my mind. With time, I started seeing that
there was a reference, that, okay, there was beautiful girls, and cool
people, and whatever, that was not me. Whenever I had a reference,
I knew I was not it. I think that hit, I had a
reverse relationship with beauty because I had it when I was young,
I felt I was perfect, I was enough, I was full, I was complete. You ended up realizing that that
confidence with yourself, with beauty, was something that was
always there, it was just covered up by layers and layers. The only thing that makes you feel
or that makes you weigh yourself. I'm just thinking about, now, I
never felt inadequate until I started comparing myself to other kids at
school, and that's when I started saying, "Oh, I'm not good at this. Oh, I can't play sports like them. I can't draw like them." It was never, until I had that reference
and started comparing, that I ever started to have lower self-esteem. I came into my science class and
we had the substitute teacher. I went up closer to the board and
he was like, "You need to sit down?" I was like, "Oh, I'm
just trying to see it. I can't see it from far away." He was like, "What are
you, blind or something?" I was just like, "Kind of. I got bad vision." He was like, "All right, let
me make it easier for you." Then he erases it, and then no
lie, he writes the words so big and he did it in a dickish way. Did he think you were making it up
or he was just a complete asshole? Either way, he's a complete asshole. Yes. There's no way to justify that. Even thinking about it now, it makes
me sad because it brings me back to a space where I felt so isolated. There were some instances
where it got physical. I was walking outside a hoodie, my classmate
ran from behind me, grabbed the hood, pulled it over my head, and
was sarcastically remarking that you have to have the hood up
and pulling me down with the hood. At this point, I was conditioned
to feel like that's normal. It's normal for me to get picked on. I didn't fight back, I didn't
even report, I didn't do anything. I just lived with that. How does your current day-to-day
life differ from someone who doesn't have albinism. I get to experience most of my
days with people I care about. I don't have albinism most of the time. Right. It doesn't stand out to you. In terms of media, I almost
constantly have to translate myself, contextualize myself. Sometimes, that just gets tiring. You go to a doctor and doctors will
say things like,"Are you trying to have children because if you want
to have children and you need to have some screening and whatever. We can make sure that the child
doesn't come out like you." They don't say it like that but
they definitely say-- [laughs] They're saying that they want
these recessive genes not to be passed on if you want. Whatever culture sees as different
especially if you don't have a significant number of people
to oppose it, it goes through a great deal of dehumanization. As soon as you say something is
an abnormality, then guess what? Centuries later they say albinism is a
genetic disorder or a genetic disease. Albinism is just part
of human diversity. When I was in school, at first because
I can't really see, the teachers would seat me right in front of the class. It was after a few years of switching
from doctors to doctors that one finally suggested that I use some kind
of binocular to look at the board. I actually have it right here. It's this thing. It's like a single eye binocular. I don't know, monocular. A monocular. Miniature telescope, I guess. I would just use it like this
and then I'd be able to see. Other kids, they see this and
they're like, "What's that? That's so cool." Then just they play around with it. You needed to be on par with everyone
else's vision while they would use it to go sightseeing and bird watching? Yes. Do you feel like people tend to do
a double-take when they see you or are people's reactions
pretty subdued otherwise? When I'm around little kids, they
tend to not think that I'm a human. Wow, that's such a big action
figure or doll or something. I'm the oddball in my family because
none of my other family members, even extended family
members have albinism. When I post a picture with
my family, they usually ask, "Hey, are those
your real parents." You were the first person ever with
albinism to appear on the cover of Vogue. How important was that to you? Vogue is a wonderful, incredible,
historic platform but I understood the influence that the platform had in
terms of beauty norms et cetera, et cetera. I knew that not just having
albinism, not just being Black, but also being African. Those made the odds of this particular
situation extremely unlikely. I'm carrying so many people
with me, that's what I felt. I felt like I was representing people
with albinism, but I also felt like I was representing South Africans because
I hadn't seen even a bBlack woman who is brown-skinned in South Africa on Vogue. You made some songs with lyrics
relating to you having albinism. [music] Has your ability to express
yourself through your art changed your relationship with albinism? I would say so. Before, I hated it. I used to dye my hair, I
used to dye my eyebrows. I have wanted nothing to do with it. Doing music and just being able
to express myself, and then it went from accepting to liking. Then now, I love it. You're able to fully embrace that now. Literally, my handle is albinosemme. It's like, now, I want
everything to do with it. Sahara Coleman wants to know
as a Black person with albinism, how are you treated by people in the Black
community and do you feel like you don't belong or that you're out of place? Since I was Black, it'd be times
where white people would be like, "No, I'm not fucking with you." Then the fact that I was albino and I
talked white, Black people would be like, "Oh, I'm not fucking with you." Then the fact that my skin was what it
was and I looked the way that I looked, it made everybody else go,
"Okay, if they're not fucking with him. Okay, I'm not fucking with him." My best friend from childhood, he's
biracial, so that's probably why we were able to connect, because
he was too white for the Blacks and then too Black for the whites. That's probably why me and him were
able to just connect and be friends. Ak Guversin wants to know, coming
from someone with albinism, how does your albinism
affect your dating life? One of those limitations
was that I can't drive. Sometimes that can be embarrassing,
because the most used mode of transportation here are motorcycles. People still have that standard,
that gender roles that the guy has to be the one riding it and the girl
sits on the back just holding on. A few times, I was the
one riding on the back. Again, I, myself, I don't like gender
roles, but saying that is embarrassing. I'm no one's type. You think you're no one's type? Growing up, girls see guys
on TV, like celebrity. There's no fucking albinos
on there, so it's like-- There's no representation to
establish the beauty standard. Yes, it was no one on
TV to make us look cool. It's either somebody thinks I'm super
attractive and unique and all of these things or I'm just ugly as shit. I guarantee you right now in
the comments, there are tons of people commenting that you
are their type, right now. I promise you. I'm single, so when this airs live. Semme is single and ready to mingle. Go ahead and leave some comments. Let him know if he is your type. You're definitely not out of my league. The only thing that's weird is you'll
get those people that fetishize over the fact that you're just albino. I've had girls be into that. We'll be chilling and then
she would just be like, "Yes, I've always wanted one of you. I don't care how you're
referring to someone. One of you is not-- I've had this happen more than once. I'm just sitting there
like, "All right." That's probably the biggest
turn off you can ever hear. Well, it depends on
when they're saying it. If there's anyone watching who
has albinism and is struggling for any reason, is there anything
that you'd want to say to them? You need to understand
that you are different. The fact that you're different is okay and
you need to embrace it as much as possible, because while you may think that
you're not amounting to anything or you're just isolated from the world,
on the other end of the spectrum, there's people that envy you, because
the thing is it's like some people would try their entire life to get noticed. You have that ability to
draw attention by default. You could be like me and
how I was when I was younger, and you could deflect it, and you could
be miserable, and you could be insecure, or you could take that and you can acknowledge
it and you can stand on it and say, "Yes, I am different. Let me show you why you
shouldn't look away. Let me show you that it's
more to me than just my skin." All right, you got five seconds of
shout out or promote anything you want, directly into camera. Go. Remember that difference
is part of human diversity. That is your mantra. Remember that. Check out my instagram
@arvaldodarmara, @albinoindonesia and shout out to my friend, Reyna. Follow me on all social media
@albinosemme and Semme on Spotify and check out the music. Subscribe to Anthony Padilla and stop
commenting about the emo hair back. We're done with the emo hair. We'll leave it in the past, but I will
do it again, maybe, if you ask nicely. Thank you so much, Thando, I feel
like I understand the world of albinism just a little bit more. Thank you for having me, Anthony. After spending the day with these people
with albinism, I've come to understand just how heavily misunderstood this
condition is and just how dangerous misinformation can really be. Being accepting and supportive
can absolutely make a world of difference as you never truly
know what may be occurring with someone behind the scenes. See you later.
Bye, guys. Press a like. [music] Oh, geez. I do know I do talk a lot. I can go under-- That's completely okay. We got plenty of time. I can go on this on and on, and
all you'll be saying is, "Mm-hmm." I do have about 25 questions, but
if you just want me to do two, [laughs] that's totally fine.
