AppleTalk YouTube channel: Helping People Master the iOS World.
r/AppleTalkHelp subreddit on Reddit.
What is albinism to you?
A genetic condition that shows on an albino person with extremely blonde hair, blue eyes, and very fair skin. It also affects vision.
Do you have a parent with albinism?
I don’t know, I was adopted at the age of 3 1/2 from China and don’t know my birth parents. My adopted parents do not have Albinism.
What was the moment you realized you looked different to other people?
I don’t remember. I think I’ve always looked drastically different because I’m also Chinese. So being Albino didn’t make a huge difference. People still stare.
How do you feel about the word “albino”?
I’m usually alright with it. It depends on the situation. To me, I don’t think about it a lot, but if someone I am uncomfortable being around starts pushing and pushing me to talk about it, I really don’t like it. If it’s just a curious person, I’m more than happy to explain to them.
Do you consider albinism a disability?
Sorta. It makes vision worse, which is why I’m visually impaired. My vision can’t be corrected completely.
Do people judge you because of the way you look?
A few, but it’s rare thank goodness
(For people of color) How are you treated by people of your race?
I’m not around my own race much, I rarely see another Chinese person. So I don’t really know. The few I have been around don’t treat me any different than they would a “normal” person without albinism.
Do you have vision problems?
Yes
What are things that are harder to do because you have albinism?
I’m very sensitive to light. I cannot see people when a light source is on behind them. Or when they stand in front of a window and I’m trying to looked at them toward the window. I can’t pickup anything and read it. My iPad helps me enlarge text, invert it, and make it clear to see. Flashes hurt my eyes. I cannot see in almost any distance 10’ or more away.
What are your thoughts on representation of albinism in media, e.t.c?
I want to represent Albinism to reach others about it so that they know what it is and what help they can give us.
What effects does albinism have on your life?
I cannot be outside very much. I cannot see very well, and I look different, so total strangers usually stare a little too long. I also cannot drive, so I rely on others all the time to take me places
How does albinism affect your love life?
Not much.
How does albinism affect your career?
I probably will have to work at home, since I can’t drive.
Have you lost opportunities due to albinism?
Yes
How common is it for you meeting other people with albinism?
Extremely rare, I’ve probably met only one and seen maybe one.
What stereotypes about albinism do you not relate to?
I don’t know
What stereotypes about albinism do you relate to?
I don’t know
How did you start to embrace albinism?
My mom has taught me and as I’ve gotten older and more tech savvy, I’ve done research too.
Have you been able to fully embrace albinism?
I don’t completely know. I understand what the condition is and what affects it has on me. But I don’t think a lot about it all.
Do you sometimes wish you didn’t have albinism?
Yes
What are cons of having albinism?
People stare at me, I don’t fit in, I’m relying on others because I can’t see. I won’t drive ever. I can’t go outside and have fun without worrying a lot about sunburn. I can’t see far away. Flash photos are painful. Walking takes so much energy, thought, and caution because I can’t see steps because I don’t see depth well at all. I’m limited on things that I can do.
What are pros of having albinism?
I’ve got pretty blonde hair.
I’m the person God made me to be, so I’m happy to be Albino.
What are the biggest misconceptions about people with albinism?
Because we look different, I think people don’t like us that much at first glance. We shouldn’t be judged by our looks, but we all do it, even I do sometimes.
I’ve also had a few people think I can’t do ANYTHING, so they help TOO much, but I’ve had more people push my abilities TOO much, and expect me to do things I KNOW I can’t do, like catch a ball, read fine print without my iPad, or for that matter my iPhone, which can do the job in a pinch.
What are facts about albinism?
Albino is a Reese’s I’ve genetic condition, which affects the hair, skin, and eyes.
We’re blonde and fair skinned because we have no pigment in our hair, skin, or eyes.
We’re sensitive to light.
Because we have no pigment in our skin, we have to be very cautious outside in the sun. We don’t tan, we burn
What are things to NOT say to people with albinism?
Why are you so pale?
You should dye your hair
You’ll be fine, you can do it (in some cases)
Say something to people who have albinism.
I don’t really know, as long as it’s a genuine curious question or a compliment, not a sarcastic compliment, it’s fine with me.
Say something to people who don’t have albinism.
Talk to them like you would anyone, same goes for Albino people.
Who is your favorite celebrity/character with albinism?
I don’t have one.
Do you love or hate having albinism?
Neither
Share your experience as a person with albinism.
I don’t do a whole lot of extra activities, partially because I’m visually impaired and/or because I can’t be out under the sun for long, but I like my life. I’m home schooled, so my Mom teaches me and I can see because I’m not in a classroom with a lot of other kids and we don’t use a chock board at all. She read my history and science to me. I take my time on Math, I don’t have to rush to take pictures, usually, and I don’t have to fight to use my iPad for school. I do what I can to help at my church running the livestream once a month, playing in the worship band on the keyboard, and volunteer helping in the ministries I used to love as a young kid. I attend my church’s Youth Group on Sunday evenings. I run a YouTube channel called AppleTalk to help people learn how to get the most out of iPhone and iPad. I enjoy writing, I do it all on my iPad, and I like to draw. Mostly on my iPad, but sometimes I like to do sketching on paper. I’ve done origami before and enjoyed it, it’s just harder for me because I can’t see as well. I use YouTube for the tutorials. I’ve also made Rainbow Loom Bracelets before. Also harder because of my vision, and again, I use YouTube for tutorials. I used to do card tricks, but because of my tiny hands and the uncomfortable part of watching videos with, well for a lack of better words, not the greatest content, I quit that mostly. I like to collect card though and I still occasionally will learn a card trick for my friend and/or family.
(Someone sees you in real life, it’s obvious that you are, but they are asking ): “Are you an albino?” Reply savagely.
I’d say, “Yes, I am,” and I’d force a smile, then turn and walk away proudly.
Or I’d say, “Ask nicely, and I’lll answer,” then walk away.
Or I’d act like I didn’t hear and turn and leave.