I've talked before about how many in China view children/people with albinism as being cursed. I've also read horror stories about how people with albinism (especially children) are hunted and killed in other countries. The myths and stories and outdated views about people with albinism are terrible.
While people with albinism in our country, thankfully, are not hunted or viewed as cursed or shunned, I still think that most people have little knowledge about albinism or about people with albinism. Most people don't really know what someone with albinism looks like (they always think that they have red eyes). Many people aren't familiar with the possible vision differences someone with albinism might have. And still others hold incorrect assumptions about the ability of someone with albinism to go outside or to play in the sun. Emily and I have found this to be true when we've been out and about to stores, to church, to school, etc... -- and we live in a major metropolitan area where people are generally well-educated and well-traveled (not that any area is immune to a lack of knowledge or to misinformation).
Most people we've encountered have never met or even seen (outside of a movie) anyone with albinism. Most are surprised that Emily's eyes are blue. Sadly, most seem surprised that she's a beautiful (yes, I'm biased) girl. Some seem surprised by how "normal" she is and how she does anything any other little children do. I've viewed our encounters as positive because we can show people what having albinism actually means vs. what they might have just heard or, worse, seen in a scary movie. I really believe that most of the people who have crossed Emily's path (at church, school, Target, grocery stores, soccer fields, theme parks, etc...) have departed better educated about albinism. I hope that their having met Emily will favorably color their future impressions of any other people with albinism they might one day meet. Although I'm sure the day will come, we have - in our 14 months home - not really encountered anyone who has said anything negative about Emily or about albinism. (With the exception of one older neighbor, at a "block party," who told me that the only person she'd ever seen with hair as white as Emily's was (theatrical whisper) "an albino - who had red eyes and couldn't see at all!" I highly doubt that she ever knew such a person, but I chalked this up to this woman being at least 90 years old. Plus, it didn't even register with her that Emily has albinism.)
On our trip to Disney, we went to Epcot one night and ate at the China pavilion. The food was great and the kids loved it and it was fun to show the boys a little of what some parts of China had been like last year. Our waiter was from (so said his Disney "Cast Member" name tag) Guangzhou (it actually said Canton, the former name for Guangzhou). When we finished eating, he asked if we had ever been to China and was surprised when we answered that we had been to China and had spent a week in Guangzhou. He asked why we were there and we told him it was to adopt Emily. He almost dropped his tray of plates as he stared at us and at her. He finally said, "She's Chinese?" When we said yes, he stammered, "But the white hair?" Justin explained that she has albinism. His response was "Oh no, I'm so sorry." This was said more in a way that you would say you were so sorry if someone told you their child was terribly sick or had been in an accident vs. an expression of disgust. We said, "Oh no, there is nothing to be sorry about. She is wonderful!" He continued to look at her and then said, "And she's normal? She's really OK?" We said, "Yes - more than OK. She is smart and funny and totally normal and is having a wonderful time at Disney." He smiled and took away the plates.
At first, this made me mad and then it made me sad. But, the more I continued to think about it, the more I realized that the longstanding views (in China and elsewhere) about people with albinism are based upon a complete lack of knowledge or information about albinism. I hope that this waiter will never look at another person with albinism in the same way. If he sees someone else, I hope he remembers Emily - sitting with her family at Disney and happily eating her food, coloring on the placemat, and chattering on about Mickey Mouse.
There is always fear of the unknown or of things or people we don't understand. And, if you grow up in a culture where certain types of people are shunned or are not talked about or are viewed as cursed -- and you never actually meet someone like that, you might just perpetuate those views -- even if you are not trying to be mean. But, I've found that it's almost always the case that when you meet an actual person with a certain need or disease or physical challenge -- or even a person who is of a different religious background or who is from another country or who holds different political views than do you, etc..., and you learn about them, you start to find that your old, uninformed views change. You start to see him or her as a human being with a heart and a family and with hopes and dreams and fears just like you. Everybody is someone's daughter or son or father or mother or friend - a life to be respected and to be treated with grace and with kindness.
With knowledge and an open heart and mind, everything can change. So, Emily and I will keep on getting "out there" and trying to change the world where we can.
Most people we've encountered have never met or even seen (outside of a movie) anyone with albinism. Most are surprised that Emily's eyes are blue. Sadly, most seem surprised that she's a beautiful (yes, I'm biased) girl. Some seem surprised by how "normal" she is and how she does anything any other little children do. I've viewed our encounters as positive because we can show people what having albinism actually means vs. what they might have just heard or, worse, seen in a scary movie. I really believe that most of the people who have crossed Emily's path (at church, school, Target, grocery stores, soccer fields, theme parks, etc...) have departed better educated about albinism. I hope that their having met Emily will favorably color their future impressions of any other people with albinism they might one day meet. Although I'm sure the day will come, we have - in our 14 months home - not really encountered anyone who has said anything negative about Emily or about albinism. (With the exception of one older neighbor, at a "block party," who told me that the only person she'd ever seen with hair as white as Emily's was (theatrical whisper) "an albino - who had red eyes and couldn't see at all!" I highly doubt that she ever knew such a person, but I chalked this up to this woman being at least 90 years old. Plus, it didn't even register with her that Emily has albinism.)
On our trip to Disney, we went to Epcot one night and ate at the China pavilion. The food was great and the kids loved it and it was fun to show the boys a little of what some parts of China had been like last year. Our waiter was from (so said his Disney "Cast Member" name tag) Guangzhou (it actually said Canton, the former name for Guangzhou). When we finished eating, he asked if we had ever been to China and was surprised when we answered that we had been to China and had spent a week in Guangzhou. He asked why we were there and we told him it was to adopt Emily. He almost dropped his tray of plates as he stared at us and at her. He finally said, "She's Chinese?" When we said yes, he stammered, "But the white hair?" Justin explained that she has albinism. His response was "Oh no, I'm so sorry." This was said more in a way that you would say you were so sorry if someone told you their child was terribly sick or had been in an accident vs. an expression of disgust. We said, "Oh no, there is nothing to be sorry about. She is wonderful!" He continued to look at her and then said, "And she's normal? She's really OK?" We said, "Yes - more than OK. She is smart and funny and totally normal and is having a wonderful time at Disney." He smiled and took away the plates.
At first, this made me mad and then it made me sad. But, the more I continued to think about it, the more I realized that the longstanding views (in China and elsewhere) about people with albinism are based upon a complete lack of knowledge or information about albinism. I hope that this waiter will never look at another person with albinism in the same way. If he sees someone else, I hope he remembers Emily - sitting with her family at Disney and happily eating her food, coloring on the placemat, and chattering on about Mickey Mouse.
There is always fear of the unknown or of things or people we don't understand. And, if you grow up in a culture where certain types of people are shunned or are not talked about or are viewed as cursed -- and you never actually meet someone like that, you might just perpetuate those views -- even if you are not trying to be mean. But, I've found that it's almost always the case that when you meet an actual person with a certain need or disease or physical challenge -- or even a person who is of a different religious background or who is from another country or who holds different political views than do you, etc..., and you learn about them, you start to find that your old, uninformed views change. You start to see him or her as a human being with a heart and a family and with hopes and dreams and fears just like you. Everybody is someone's daughter or son or father or mother or friend - a life to be respected and to be treated with grace and with kindness.
With knowledge and an open heart and mind, everything can change. So, Emily and I will keep on getting "out there" and trying to change the world where we can.
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