Today is National Albinism Awareness Day. Do you know what Albinism is? Follow this link if you’d like to learn more All Things Albinism .
Most people don’t know what Albinism is and can sometimes stare or whisper at first glance. Lots of times people are startled when they see someone with albinism because they have never seen someone with white hair before.
As a new mom of boys with albinism I often mistook the general curiosity of most people for cruelty. I would go home angry and hurt after an outing because of all of the whispering and staring. Thanks to NOAH (The National Organization for Albinism and Hypopigmentation) I learned due to the rarity of Albinism (1 in approximately 20,000 in the US) most people just don’t know much about it. They suggested I educate people about what Albinism is and what it is not.
So….. I changed the way I thought about the stares, the whispering, and even (gasp) the occasional pointing! Now when people look or whisper in our direction I remind myself that they are most likely wondering not judging. When this happens I generally find a way to tell the person or people about albinism. I say something like- I see you noticing my son’s hair. Isn’t is awesome!?! We call it his rockstar hair. And then I give them a quick lesson on albinism. By doing this I avoid feeling angry or hurt and end up having lots of pleasant conversations. That’s not even the best part. The BEST part is what it does for the boys. They see me educating people, in a matter of fact way, about their albinism. It gives them an example of what to do and how to explain things when they are in a similar situation and it normalizes it for them.
If you ever have any questions about Albinism please just go on ahead and ask. I love spreading knowledge about this magical condition my children have been blessed with.
#albinism #educate #lifelonglearner #bekind #benice #rockstarhair #albinismisbeautiful #stephenandjoseph #magicmatters #findyourmagic #differentnotless #magicalbeauty