With everything I am about to say, it is my intention to represent only the opinions of me and my family.Â While I do refer to other parents, my statements do not reflect the views of all parents of children with albinism or individuals with albinism. Â People who know me and my family through NOAH or AI, probably already know my opinions on this subject, so for some of you… I am preaching to the choir. Â As for the rest of you, my friends and my family, I mean this in the kindest most loving way possible…
Please do NOT refer to my daughter Lyra as “Albino”. Â This is a REALLY BIG DEAL! Â If you LOVE us…Please RESPECT our feelings on this.
And I don’t mean, don’t use the word albino only when I am around to hear you. Â I mean don’t use the word in reference to Lyra at all, even in conversations with your friends, other family members, and especially your kids. Â Why? Â Because you are setting an example.Â When you do this, what you are teaching people is…Â it’s okay to use the word albino in reference to Lyra…as long as you don’t use it around her crazy overprotective mother.
Please be considerate of our family and our feelings on this issue. Â Those of you who I hear hesitate when you try to say the word albinism are the ones I suspect are secretly using the word albino behind my back. Â Just learn how to say the word albinism and how to use it properly and then teach others how to say it.Â It’s really not that difficult.
Click Play:Albinism Pronunciation 1
Don’t get all huffy like this is about political correctness or something. Â This is SO much more than that. Â The word albino is offensive for a number of reasons.Â The word and the use of the word cannot be equally compared to anything else.Â Allow me to try to explain WHY this is such a big deal.
People in general are much more familiar with the termÂ albino, yes, but what they’re familiar with, in most cases isn’t even true albinism. What they know of “albino” isn’t even fact.Â What they know about the wordÂ albinoÂ is what they’ve been conditioned to think…what they’ve seen on television or in books.Â If a word is used in a derogatory way enough times, eventually people forget that the word ever meant anything else.Â So in a way, it isn’t really the word itself that is negative…it is how society perceives the word and what it means.
These negative representations of albinism, using the word albino are everywhere. Â Albino has been used as a negative word for hundreds of years and continues to be stillÂ today. (SeeÂ Here,Â Here, andÂ Here)Â Yes…I KNOW there are offensive portrayals and misrepresentations out there of individuals with other disorders/disabilities like autism, down syndrome, schizophrenia and mental retardation, but it is NOT the same as albinism.Â There is also no shortage of offensive inaccurate portrayals of people from other cultures and races.Â This is NOT the same either.Â Many disability groups and minority groups have gotten a bad rap on TV or in the movies over the years.Â However, the big difference for those groups is that for every inaccurate portrayal, you will also find many many examples of accurate portrayals. Â That’s not the case with albinism. Â There have been no TV shows or movies in the past that have presented an accurate portrayal of a person with albinism. Â If you think you can find an example of a portrayal of person with albinism who is not evil, weird, stupid, scary, magical, or inhuman, then please…send it my way. Â That would be a first. Â Better yet…find me 5 examples of accurate portrayals of albinism and then maybe we could put together an Anti-THIS.
You will also find that there are many examples of misrepresentations of albinism inÂ non-fiction works/publications. Lyra’s older sister Rebekah has already come across some of these examples in her school science textbooks and in other books in her school library. If not influenced enough by the inaccurate textbooks and books, there are plenty of children’sÂ TV shows andÂ movies to further perpetuate the myths. Â And don’t think even for a minute, that kids aren’t picking up on these less than subtle messages. Rebekah has had to deal with teasing and ridicule regarding her little sister on more than one occasion. Â Last year there was an incident at school in which a certain mean girl said to Rebekah… “Does your mom beat yourÂ albinoÂ sister?”
To me/us, referring to Lyra as an albino implies that she is something other than a human being…something other than our sweet beautiful little girl. Â Another reason that the issues related to the word “albino” are so unique is because unlike other disorders/disabilities, albinism crosses species and even scientific kingdoms.Â There are albino squirrels, dolphins, alligators andÂ tigers.Â There are evenÂ albino beets,Â albino melons,Â albino orchids, and the most offensive of all…albino alligator shoes.Â These “albino’s” are put on display in zoos, circuses, and exhibits and areÂ Oooo’dÂ andÂ Ahhhh’d over because of their uniqueness.Â They are unique because of WHAT they are…not WHO they are.Â To most people, THATÂ isÂ albino. Those, as well as the numerous Hollywood portrayals are what come to people’s minds when they hear the word albino.
THAT, is not Lyra or even something I want to be associated with her! Â Lyra isn’t aÂ sideshow or a science project! Â Human beings deserve more respect than that.Â Lyra is special for WHO she is, not WHAT she is. Â An adult with albinism I know once made a comment on this subject that I thought was a great way of thinking. Â He said, regarding labels, Â “They do not define my identity, but they are part of it.”
Don’t tell me to get over it. Â Don’t tell me I’m overacting. Â Don’t make excuses for other people either.Â Ignorance is NOT bliss.Â I understand that albinism is not the word most people are familiar with…So What!Â Get familiar with it! Â Parents who prefer the term “person with albinism” also deserve respect.Â Â Don’t assume that just because we prefer “person with albinism” that we are in some form of denial or that we are still “coming to terms” with our child’s albinism.Â Don’t tell me I just need to accept the word albino or that I have to “own it” or something.Â I’d much rather take the time to educate people than risk them making the association with what they think they know about an “albino.”
I respect those individuals who chose to use the word albino in reference to themselves or their own child. Â However, I will politely correct anyone who uses it in reference toÂ Lyra. Â Generally, with the nice people who make comments or ask questions, Â most are very accepting of and grateful for the information….even when I have to correct them.
One thing that really hurts me is that fact that I had to write this post for you all, my friends and family. You are the ones who know me and know Lyra and how special she is to all of us. Yet you brush aside my views like I’m just another overprotective mom. You have NO IDEA what it is like! You have never had a child with albinism, so don’t pretend to have even a clue about what we’ve been through. Â If perfect strangers at the grocery store can respect our views regarding the word albino, I really hope that our closest friends and family would do the same.
If you haven’t already seen it, please watch the video I made calledÂ Perception Is Not Reality. Â You can read the opinions of other parents of children with albinism and adults with albinism on the subject here:Â Is the Word Albino Derogatory?