Don’t Call My Child Albino!

Posted By on April 23, 2010

With everything I am about to say, it is my intention to represent only the opinions of me and my family.  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.  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.  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”.   This is a REALLY BIG DEAL!  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.  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.  Why?  Because you are setting an example.  When you do this, what you are teaching people is… 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.   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.  Just learn how to say the word albinism and how to use it properly and then teach others how to say it.  It’s really not that difficult.

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Don’t get all huffy like this is about political correctness or something.  This is SO much more than that.  The word albino is offensive for a number of reasons.  The word and the use of the word cannot be equally compared to anything else.  Allow me to try to explain WHY this is such a big deal.

People in general are much more familiar with the term 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.  What they know about the word albino is what they’ve been conditioned to think…what they’ve seen on television or in books.  If a word is used in a derogatory way enough times, eventually people forget that the word ever meant anything else.  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.  Albino has been used as a negative word for hundreds of years and continues to be still today. (See HereHere, and Here)  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.  There is also no shortage of offensive inaccurate portrayals of people from other cultures and races.  This is NOT the same either.  Many disability groups and minority groups have gotten a bad rap on TV or in the movies over the years.  However, the big difference for those groups is that for every inaccurate portrayal, you will also find many many examples of accurate portrayals.  That’s not the case with albinism.  There have been no TV shows or movies in the past that have presented an accurate portrayal of a person with albinism.  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.   That would be a first.  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 in 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’s TV shows and movies to further perpetuate the myths.  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.  Last year there was an incident at school in which a certain mean girl said to Rebekah… “Does your mom beat your albino 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.   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.  There are albino squirrels, dolphins, alligators and tigers.  There are even albino beetsalbino melonsalbino orchids, and the most offensive of all…albino alligator shoes.  These “albino’s” are put on display in zoos, circuses, and exhibits and are Oooo’d and Ahhhh’d over because of their uniqueness.  They are unique because of WHAT they are…not WHO they are.  To most people, THAT is 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!   Lyra isn’t a sideshow or a science project!   Human beings deserve more respect than that.  Lyra is special for WHO she is, not WHAT she is.   An adult with albinism I know once made a comment on this subject that I thought was a great way of thinking.  He said, regarding labels,  “They do not define my identity, but they are part of it.”

Don’t tell me to get over it.   Don’t tell me I’m overacting.  Don’t make excuses for other people either.  Ignorance is NOT bliss.  I understand that albinism is not the word most people are familiar with…So What!  Get familiar with it!  Parents who prefer the term “person with albinism” also deserve respect.  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.  Don’t tell me I just need to accept the word albino or that I have to “own it” or something.  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.  However, I will politely correct anyone who uses it in reference to Lyra.  Generally, with the nice people who make comments or ask questions,  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.  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 called Perception Is Not Reality.  You can read the opinions of other parents of children with albinism and adults with albinism on the subject here: Is the Word Albino Derogatory?

UPDATE: Please see my follow-up article here- Albino Revisited 


Comments

13 Responses to “Don’t Call My Child Albino!”

  1. Melissa says:

    Amazing post. Well, written. We have not come across our son being labeled to our knowledge yet but I am sure the day will come and now I know how to handle. Thanks!

  2. Melissa says:

    Oh…I forgot to mention he has both albinism and autism

  3. Lisa says:

    THANK YOU! THANK YOU! THANK YOU! I am the mother of a two year old son with albinism. Every word you wrote is exactly my thoughts and feelings. I struggle on a daily basis with the word albino and all the negative connation that comes with it and the lack of use of the word albinism at my request. Please continue to post…I enjoy reading and feeling a sense of understanding!

  4. Monica and Aiden says:

    Hi there! I hope you all are doing well! I cannot wait to see you again at the conference this summer and to finally meet Lyra. I really enjoyed your post and it helped me put in to words more clearly what I try to explain to people, so thank you for the guidence. Hugs!!!!! If you do not mind I think I will add this to my blog (of course with documenting it is from you) to help people who dont know you but know me understand our world a little better. Hugs again!

  5. Thad says:

    Well said. Thanks for voicing this and for providing all the links.

  6. Marla says:

    Mashawna, well said. I wish I had a dollar for everytime I explained my children had albinism and received a response back, “Oh, I thought they were albino.” Education is definately a good thing.

  7. Daniel says:

    Hi, my name is Daniel. I am 14. I am 6feet 2 inches tall. I have pale skin, generally blond hair, and blue eyes. I have nystagmus. Over the year of being left out of everything and made fun of by everyone except family. I have no tears left to shed.Yet,I still have the hatred for everyone who has made my life painful. My only hope is built by the developing pigment in my skin a well as the darkening in my hair. I don’t know what to do: My new nicknames are essentially “Albino kid” or “Albino freak”. No one wants to be the same but no one want to be different. I’m tired of being told I’m special. Well clearly I’m not special enough to gain the respect of others.( I don’t really know whether I’m really albino or not but my doctor says that I have mild albanism)

  8. Grey says:

    I don’t understand what the problem with the word albino is. I am albino myself, but other than the normal teasing everyone gets when they’re very young, I haven’t had problems and nobody thinks I’m evil, or unintelligent or deaf.

    After I read this, I asked my mom if she had had any problems with this, as she is the one who has been raising me for fourteen years, and she told me that she had never heard of people thinking of albino as something bad. Curious, yes, because as you say, only one person in around 17,000 is albino, but curiosity is not unhealthy.

    So while I understand you trying to defend your daughter, I cannot say I share the view at all. I don’t mind being called an albino.

  9. Rayna says:

    Hey there,
    I am just wondering if the 14 year old boy who thinks he may have Albinism, received any replies or guidance? there are no posts after his?? I am the mother of a 9 year old boy with Albinism.
    Thanks you for writing this!! its good to know i’m not the only “sensitive” mother of CWA out there!!

  10. admin says:

    Grey,
    Please see the following post: http://www.parentofachildwithalbinism.com/new-posts/albino-revisited/

    Please know that my concern with the word albino is not atypical. I understand that every parent is different. It is unfair for you to criticize me simply because my views differ from the views of your mother. I appreciate your comment and that you can share your perspective, being a person with albinism. However, it is impossible for you to fully understand what it is like to be the parent of a child with albinism and the range of emotions many of us go through.

  11. Grey says:

    Miss Admin,

    Sorry, but I wasn’t critizing. I was just saying I didn’t understand your concern. I feel as though being afraid of the word albino is what makes an albino child insecure. You showed no fear when explaining to your daughter, and so she had no fear herself.

    But really, kids are strong. They used to call me Casper at school (which is odd, because that was going to be my name, and when I was born my parents were like “yeah… I don’t think we’re going with that anymore”, haha) but I know another albino boy who was bulied at school because his mother used to make hom afraid of what he was, so he had low self-steem.

    It might just be me, but I think sometimes parents should understand that their kids will not be bullied if they feel good about themselves, and a lot of parents with albino children are afraid themselves. You did a good job, but I think we should stop fearing the word, you know?

  12. aikero says:

    I am a person with albinism and I agree with this mother. I always have. However, I have only become vocal about it in recent years.

    Growing up, my family including my mother seemed ok with the word “albino.” However, they only did so because they felt they had no choice. These days, with the growing option not to be called “albino,” most of my family gladly shifted away from it and would readily support the position in this post.

    To those who disagree, please note that because everyone has different experiences, exposure, and indeed courage to potentially face more abuse from others, the result will always be that opinions and positions will differ.

    The fact that someone else also has albinism and disagrees with this post does not invalidate the position contained in it. It just means there is disagreement, and that is it. In the black civil rights movement, and feminist movement, just to name a few, people within the group being represented disagreed abut having the movement at all and names to be used etc. So disagreement among a historically ostracized group is not new. Rather, it is often part of the process because change will always be either embraced or rejected.

    All of this to say that time/history and the Truth ultimately reveals the better position for human rights and above all, human dignity. So, let history and truth do its thing.

  13. Anonymous says:

    I too am a mother of a child with albinism and I too have tried to be patient as I don’t think people mean harm, it’s a lack of understanding. It does niggle me when the term ‘albino’ is used as it is often in the context of my daughter being an albino. She is not an albino, she is a girl. I think the issue here is the use of ‘an’ as if to define my daughter as a completely different species- she is a girl (a beautiful one of course!), a girl with albinism. The difference is when the term is used as definition as opposed to descriptive. I politely correct people when I can but my daughter is still young and so I have no idea how long my politeness will last! Thank you for the post as it opens important discussions and I feel helps me to calmly continue correcting people.

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