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What is albinism to you?
Albinism is a genetic mutation that often times effects pigmentation of the skin, hair, eyes, etc. and can cause vision issues.
Do you have a parent with albinism?
No
What was the moment you realized you looked different to other people?
I learned pretty young that I looked different than others, growing up in an Asian American family it became pretty apparent that I did not look like most of my family.
How do you feel about the word “albino”?
I’m still somewhat conflicted about it, I sometimes use it to describe myself to others, but at times it can feel like it is being used in a condescending way. Growing up I was neutral on the topic until a friend of mine who also has albinism brought it to my attention that he found the word offensive. After that I went through a phase where I staunchly believed it was inappropriate to use. But as I’ve grown older I understand that many people are uneducated about albinism and don’t know how to approach the topic.
Do you consider albinism a disability?
In some ways, yes. Having albinism does make many day to day tasks harder, especially for those of us who have poor eye sight. But I like to think that I’m playing the game of life on a harder difficulty than the average person.
Do people judge you because of the way you look?
I’m sure they do, but growing up with albinism I believe helped me develop thick skin and not care what others think. Over the past few years I’ve chosen to grow my hair and beard out, which is definitely interesting when you have pure white hair at 23.
(For people of color) How are you treated by people of your race?
When I was in school it was always harder to connect with other Asian students who would deny that I was also Asian. It doesn’t help that I never learned Vietnamese.
Do you have vision problems?
Yes, I qualify as legally blind with corrected vision of 20/200
What are things that are harder to do because you have albinism?
See, sorry but in my opinion that is probably the hardest part about having albinism. Especially when it keeps you from experiencing a certain level of freedom when you can’t drive. Personally I love warmer weather and soaking up the warmth of the sun, but having virtually zero protection from the sun does make it harder for me to enjoy. I love going to the beach, but it’s not quite the same when you have to choose between constantly applying sunscreen or wearing clothing that adds protection and spending a majority of the time under an umbrella.
What are your thoughts on representation of albinism in media, e.t.c?
I’m not very familiar with how albinism is portrayed in movies/tv, but my understanding is that often times we are depicted as villains or demonic creatures. On the other hand, social media has definitely helped shine a more positive light on albinism, I try to use my platform to educate people and show that although someone has albinism, we are still people too, and are capable of doing anything we put our minds to, and I know there are many other creators with the same goals.
What effects does albinism have on your life?
I think the biggest one is the vision issues and the side effects that come along with it, mainly driving for me. Especially since I live in an area that has very little public transportation.
How does albinism affect your love life?
I’ve never really pursued any relationships, and I think that the main reason is my fear of having a child with albinism
How does albinism affect your career?
Having albinism can definitely make it harder to work in certain career paths and completely cuts out others. The hardest part is navigating through the biased employers, a few years ago I was fired from a job I had for multiple years when I got a new manager who scrutinized my work harder than any other employee and eventually found what he thought was completely unacceptable, which was caused from my lack of vision. I’ve worked with with many other companies, managers, and coworkers who are very understanding and accommodating of me.
Have you lost opportunities due to albinism?
Definitely, from jobs that I was well qualified for, to the day to day activities that just aren’t feasible when you can’t be in the sun for long periods of time or require a certain level of visual acuity.
How common is it for you meeting other people with albinism?
I think it is pretty easy to connect with others who have albinism, especially with social media. There are also communities like NOAH that hold conventions around the US that bring together hundreds of people with albinism of all ages.
How did you start to embrace albinism?
It wasn’t really a conscious thought of mine until my barber brought it to my attention, but I think it was when I started growing my hair out and loving my natural look. It has been a very spiritual journey for me and has helped me accept who I am and show others that I am not afraid to express myself.
Have you been able to fully embrace albinism?
For the most part I think I would say yes, I am proud to be who I am and enjoy looking different than most people.
Do you sometimes wish you didn’t have albinism?
All the time! I wonder what it’s like to have perfect vision and not have to worry about being in the sun for too long.
What are cons of having albinism?
Bad eye sight, no pigmentation/natural protection from the sun, bullying while in school, being seen as an outsider
What are pros of having albinism?
You stand out from the crowd, everyone might not know you personally but they definitely recognize you. It’s pretty hard to forget meeting someone with albinism, especially when you are the first person with albinism they’ve ever met.
What are the biggest misconceptions about people with albinism?
There’s a common misconception that all people with albinism are black, in reality any race can have albinism
What are facts about albinism?
Albinism is a recessive gene and requires both parents to be carriers of the gene to have a child with albinism. Even if both parents have the gene, there is only a 25% chance that a child is born with albinism.
What are things to NOT say to people with albinism?
“Do you want to go tan?” For the most part, I’m cool with anyone asking me any questions they have, as long as it comes from a place of curiosity and a willingness to learn more.
Say something to people who have albinism.
To anyone younger out there with albinism, who may be struggling with it, I was there too. Love yourself and don’t be afraid to be you, at times things may feel hard, but keep your head up.
I’m not sure if I’m the only one, but over the past few years I have adapted my wardrobe to include mainly long sleeve t shirts which I really enjoy, it’s definitely helped cut down on the number of sunburns I get since I am not the biggest fan of applying sunscreen.
Say something to people who don’t have albinism.
Don’t forget to enjoy the little things in life, I’ve always wondered what it’s like to be able to just sit down and watch nature
Who is your favorite celebrity/character with albinism?
Myself, at least I hope to be a celebrity one day
Do you love or hate having albinism?
Both
(Someone sees you in real life, it’s obvious that you are, but they are asking ): “Are you an albino?” Reply savagely.
Yes, I do have albinism