blondewhimsy

looking at life through a platinum blonde fringe.

Are y’all related?

on July 28, 2012

Are y’all related?

We recently attended a conference in the US (NOAH conference) and conversations led to comments and questions passers by ask.

“Is that your natural hair colour?”

“People would pay heaps of money for that hair”

“My kids were that blonde too, he’ll grow out of it”

“Why have you put sunglasses on your baby?”

We agreed that one of the most annoying of these is when we’re with another PWA (person with albinism) and someone asks “Are you related?”

Often people just say yes because it’s easier.

I actually experienced this twice in one week, both times with the same friend. One person just asked if we were related, the other referred to my (11 year younger) friend as my daughter.

The same thing came up – why do people only look at our hair? Why can’t they see past that one common factor?

If you approached a table of numerous Chinese people together, would you simply assume they are family? If you saw a group of Africans together, are they friends or a large family? We aren’t any different, although I admit it’s more unusual to see a group of people with albinism. And while I don’t expect people to look closely enough to see our differences and similarities, it seems people tend to make quick assumptions.

Albinism is only one small part of who we are. we also carry the genetic makeup of our family, so noses, ears, height, weight, curly or straight hair, loud, quiet, jokey or serious…. is all uniquely our own. So while I have the same hair colour as my friend, she actually looks nothing like me. Our children would never mistake us. But still it is an assumption.

I believe it relates to education. Many times I have heard “wow there are chinese albinos!”, or similar. The understanding that albinism is genetic not racial is one that people don’t instantly “get”. And that’s not their fault. With only 1 in 17 000 people in the western world having albinism, it’s not very common. Even medical specialists can go their whole career and only meet (maybe) one in their time.

Just as other genetic hiccups occur worldwide, albinism does too. As soon as two parents with the same recessive gene create a child, there is a one in four chance the child will have albinism. And given that we all carry about 20-30 recessive genes, (1) and 1 in 70 carry the gene for albinism (2)…… it’s interesting odds.

With so many people bleaching or lightening their hair, and people buying the stereotype of albinism – that of red eyes, straw like white hair and tissue-like skin,sometimes people with the condition aren’t even acknowledged! (For example, most people tell me they thought I was just really blonde. The word albino doesn’t always register with them because I ‘don’t have red eyes’.)

Families having one or two children each for a couple of generations can unknowingly mask the presence of albinism as well. Suddenly, a child is born with albinism and both parents look at each other and say “well it’s not from MY side of the family”. Actually, it is. Recessive genes need a copy from both parents to become active. The one in four chance means it can skip two children (or appear in two children!) for a couple of generations, coming as a surprise. There may be a vague recollection from a relative or it may be obvious that there is a connection. Either way, there is your beautiful child with platinum hair.

As the world becomes smaller – or more accessible – people with albinism reach out to each other and connect and share stories. There are facebook pages, email / chat groups and conferences. Connecting with other people who have been through the same as you – the questions, the teasing and bullying, the misunderstanding, the frustration of low vision – is a link that is strongly forged; in some cases almost instantly. Meeting and reuniting with these people from all walks of life and all locations of the world is a joy and a frustration. It’s a bittersweet time of catching up, talking about new technologies and research, finding out about colour schemes that work and whose life has changed and how – it’s kind of a great big family reunion. A non-blood family reunion. Because, you know, we’re not all related.

(1) http://healthland.time.com/2012/06/06/an-unborn-baby-gets-its-dna-sequenced-is-it-cause-for-celebration-or-alarm/

(accessed July 2012)

(2) http://anthro.palomar.edu/synthetic/sample.htm       (accessed July 2012)

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