Albino Revisited

Albino Revisited

Most everyone knows how I feel about the word “albino”. It’s no secret that I avoid it like the plague. And I’ve never been one to keep my opinions to myself, see Here and Here.  The word albino evokes so many different and very strong emotions in me that I don’t think I will ever be completely okay with hearing it or using it.

But… *sigh*

A few months ago I began doing some serious thinking and self-analyzing over my issues with the word albino.  What prompted this time of deep thought/reflection was the sudden realization that Lyra would be starting Kindergarten in the fall, interacting with lots of other children and adults, and having never heard or been taught the word albino in reference to herself.  It was realizing that she was going to be around these people and I was not going to be there to defend her or protect her.  It was realizing that there was no way that I was going to be able to get to every single kid or adult before her, to make sure that they all knew not to use the word albino.

Crap!!!  I felt like a total hypocrite! I had gone on and on about how Lyra has known about her albinism since always and how important it was that she understand and be able to explain her albinism, yet here I was ready to send her off into this totally new world, completely CLUELESS about the word albino. I knew that eventually she was going to hear it at school and it was unavoidable.  I then decided that before Lyra was put in that situation and before she had the chance to hear the word from someone else, she was going to hear it from me!  I had to be the one to teach her what the word meant.

The first time I brought it up was the 4th of July while just Lyra and I were sitting watching fireworks from my bedroom window. I told her that “I needed to talk to her about something”, getting myself all worked up like there was going to be much more drama in this than there actually was. I told her how the word albino related to the word albinism and how both related to her. I used the fish at Cabelas as a comparison since those were the only real live albino animals she’d ever seen.  I mentioned a few examples of how she might hear the word albino used at school and ways she could respond.   Our conversation was short and very matter of fact..  Overall, Lyra’s reaction to our discussion was like…Oh, okay…More Fireworks Now!  No big deal.   Yeah right…

Nothing was said about the word albino or our talk for the next few weeks.  I hadn’t said anything to the rest of the family.  Then as August approached, I thought I better bring up the subject again. I was lying in bed reading to her one night and asked her if she remembered the talk we had a while back about albinism and the word albino.  She remembered and this time she had a lot more to say about it. We talked about a bunch of different albino animals and she practice saying what she would say to people who call her albino out loud. Our conversation this time was lighthearted and  just so…normal.
Afterwards I was like…okay…yeah…she’s gonna be fine. 🙂

So will I…probably.

When it comes to my issues with the word albino, they’re just that…my issues.  Ultimately, it all boils down to one thing…FEAR.  There’s a lot more too it.  There are specific issues that make me sad and angry, but fear is the root of them all. I’m making progress in dealing with this.  I’m taking baby-steps.  I will be continually working towards being “okay with” the word albino.  I’m not there yet.  I still don’t like the word, but for now at least, I am a little more comfortable with it.

And Lyra…. Lyra is happy being Lyra.

2 days ago:

Lyra:  “Mom, remember that word you taught me that means albinism?”

Me:  “Yeah”

Lyra:  “ALBINO! I’m doin’ the albino dance. Albino, Albino, Look at my white hair and my bright skin!  I’m doin’ an albino dance. Yeah!” (as she begins shaking her stuff all over the living room)

Me:  “Yayyy.”  (only slightly horrified… maybe)

🙂

 

 

4 Comments


  1. Ask Lyra if I can do the ‘albino dance’ with her in St. Louis next summer? I love it!!!

  2. Hello,

    as I see persons with albinism daily in hospital and care for about 600+ me and my team always found it a bit hard to say “child with albinism”, woman with albinism etc etcpp, same applies to talking with parents. Some 7-8 years ago, another word slipped itself into our communication: albinist. We feel it is much less negative than albino. albinist, specialist, optimist. We now usually talk about albinists instead of persons with albinism – and our word gets round in Germany and even has made it to one newspaper article – and this was an article I had not been involved with!

    Greetings,
    Barbara

    Medical advisor to NOAH Germany

  3. I was very heartened to read your follow-up. We have a daughter with albinism (she is a year old), and we use the term “albino” and “albinism” with equal frequency. Our reasoning is two-fold.

    First, “albino” does not necessarily have negative connotations, and if we invest it with a positive meaning then our daughter will be better able to handle scenarios in which it is used derisively. By way of example, I am Jewish. I am a Jew. I take pride in that word/label, even though there are others who may use the word “Jew” as an insult or invective.

    Second, the whole world basically uses the word “albino,” so she better get used to it.

Comments are closed.