blondewhimsy

looking at life through a platinum blonde fringe.

Albinism in the movies

It’s by no means a new topic nor a unique one, but a topic I thought I’d chip in on.

Albinism has been so badly portrayed in movies it’s a joke.

The few movies that are best known include the da Vinci code, the Matrix and Princess Bride.

Let me deconstruct them for you.

Albinism is a genetic condition. It affects 1 in 17000 people in western culture. However, about 1 in 70 people carry the recessive defective gene… So it’s not inconceivable it could appear in any family. (No pun intended)

Albinism means the person with the condition is unable to produce melanin, the substance our body uses to tan, to colour.
It therefore affects the hair and the skin of those with the condition; also the eyes, as melanin is necessary in the construction in utero of the visual pathways. (It’s not a correctable visual impairment)

Most people with albinism have a visual acuity (ability) that places them in the ‘legally blind’ category, meaning visual aids, canes, even guide dogs are constant daily reminders to those with the condition of their limitation.
Most struggle to read things you can without enlarging it or holding it extremely close. What you see clearly at 60 meters away, someone with albinism can only see from 6 metres away. Bring the numbers down, what you see from 60 cms away, they can only see from 6cm.

Okay, now we’ve got that out of the way, let’s talk about the way they look.

Not all people with the condition have pasty white translucent skin and white white hair. In fact very few do. Some, but not all. Some have gold coloured hair, yellow, light blonde or somewhere in between. Skin can have a yellow or pink tinge or can even lightly tan.

Their eyes vary from blue, dark blue, green, violet and.. Blue… They may look red but that’s light going into the eye and bouncing off the (white, no melanin) retina at the back of the eye.

So!

Now let’s go to the movies.

Da Vinci Code – not only was someone made up to look white and creepy, he.. ahem.. drove a car and was shooting people from said car. At night.
Legal blindness = no driver’s licence.
Legal blindness = pretty lousy gun skills.
Combine these .. add ‘at night…’
Believable?

The Matrix – the twins were again made up to be pasty white. They wore sunglasses which is nice because people with albinism need them; they can’t deal with glare, as the lack of melanin in the back of the eye bounces light beams around. However they wouldn’t (here we go again) use guns, nor would they be on top of moving trucks trains or cars nor driving them.

Princess Bride – one of my all time favourite movies, I have to say. But I cringe every time I see the ‘albino’ with his grotesque white skin and red eyes… his lolling tongue and his slobbering speech.. Then his equally grotesque wife appears, white and pasty as well.

So is it any wonder people question me when I say I have albinism or am albino?
No you’re not, they say.
You don’t look like one, they say.

It’s because I don’t look like they want me to look. Like they have come to believe I should look.

I don’t have white pasty skin.
I don’t have red eyes.
I am reasonably intelligent.
I smile.
I go outside.
I live a normal life.
I am normal.

2013 saw a new movie hit the box office. Sandra Bullock stars with Melissa McCarthy in a movie which features an albino DEA officer who greets their characters with “I’m albino so I must be evil, right?”.
This has upset people. It hasn’t upset people.

What his character is doing is what we all do. Defending ourselves before others attack. Like in the movie Pitch Perfect when Amy introduces herself as Fat Amy. When questioned why, she says ‘well you’ll all say it so I’m getting in first”

However, this line was used in media advertising for the movie. Taken out of context as it was, it caused large ripples of concern.
Children with albinism hearing this line asked their parents what it meant.
Parents of children with albinism asked why they had to defend their child, some saw it as bullying starting early, others saw it as a positive teaching tool.

Bullock and McCarthy’s characters refer to the officer several times as ‘the albino’ ‘that albino’ etc. Several times derogatory comments and slurs are made.
This has upset people. It hasn’t upset people.

I received a phone call from a journalist from an Australian newspaper asking for my take on the movie. As it had only been out in our country a week I hadn’t seen it, but after her call, I made sure I did.
I was expecting the lines she told me were there, and still I was taken aback.
It was like a slap in the face.

But then so is walking down the street and having someone call out ‘Hey, albino’
So is hearing people whisper or ask each otter ‘is she albino?’

And it’s real.
People have stopped in front of me, then called their friends over to ‘come see the albino’. This is what I call the ‘hey Ethel’ situation.
(I imagine them saying ‘hey Ethel you ain’t never seen nothin like this before’)

So many misconceptions.

But then I think about the world. What do I know of living with cerebral palsy?
What do I know of living with leukaemia?
What do I know of living every day with any other genetic condition someone might have?
A condition that they get teased about and that is probably misrepresented in movies and media…
That I have no idea is being misrepresented?

I get it.
I get the upset it has caused.
Albinos are usually cast as the bad guy, they evil guy, the possessed or mentally incapacitated person.

And we’re sick of it.
We’re sick of people who are tanned being made up to look white and pasty, of having red contacts put in their eyes and of portraying people with albinism so, so wrongly.
And why is it always albinos? Are we such an easy target?
Why is the wrong wrong information continually being portrayed?
We want to say enough is enough.

But I honestly don’t think ‘the heat’ is the movie to do this with.

Most people responded to my questions via social media to say it was a comedy,
the guy was a doofus,
He WASN’T the bad guy in the end
He proved Bullock and McCarthy’s characters wrong.

Here’s part of my response to the journalist. (A wee bit of repetition)

“I think the fact that the movie is a comedy made a difference in perspective; rather than the person with albinism playing the ‘evil’ character or the character set in a demonic or horror genre, he was being deliberately provoking and, as someone said, ‘showed Melissa McCarthy’s character to be wrong ”

Apparently in the USA there was radio advertising which featured the line about “I’m albino so I must be evil” which of course showed the line totally out of context and did cause some upset, mostly from parents whose children heard it.
The movie and advertising prompted a lot of parents of young children with albinism to voice concern about the future for their children; the prospect of teasing and anti-albinism attitudes, but it is a part of life for anyone with any “difference” be it height, weight, race, markings, etc.
In this bullying society it’s hard to avoid.

Other parents saw it as a positive teaching tool, how to encourage their kids and teach them responses to possible teasing etc.

Some were disgusted that again someone without albinism was cast in the role, still more were pleased that he had blue eyes (which we DO have, not the stereotypical red!)

I watched the movie this week, and admit I had a knee jerk reaction of “what the…” To some lines, even though I was expecting them. It was uncomfortable, but no more so than comments I get on the street, so I think it’s just one of those things.

I can see that the director tried to show he was poking fun at the typical stereotype but it wasn’t overt.

Of course there are people with albinism who will find this movie and character totally devastating; many of us have just had to go past this and move on. This is not negating those feelings in any way, they are valid and real, but some of us figure it’s just part of living with albinism, indeed any condition that sets us apart from ‘the norm”

And here’s my bottom line:
It’s a little known condition and even medical specialists don’t always know much, which is by no means their fault – many specialists, even eye and genetic specialists can spend their career without meeting someone with albinism – meaning they can unknowingly give incorrect information to parents of newly diagnosed babies, so education and advocacy is at the heart of our organisation. [Albinism Fellowship of Australia]”

——-
And it’s at the heart of us all.

Parents and grandparents, I hear your pain. I understand your concern, I’m in no way belittling it or ignoring it.
It’s real, it’s valid and it hurts. You hurt for the future for your child, and that’s definitely normal.
You wonder what’s ahead, and if you could, you’d strip all the possible hurt away and make the path clear.
I get it.

Movies incorrectly portray race, socio-economic standing, gender and careers. Dark skinned teenagers in ‘hoodies’ have learned this all too well.

We need to educate so loudly that we are heard.
Advocate for your child or yourself.
We know albinism isn’t a death sentence.
We know it doesn’t affect yours or your child’s lifespan, the ability to reproduce, the chance at independence or mental capacity.
educate via social media, in the classroom, in your life. Every time someone with albinism succeeds in this world, be it sport, music, TV… whatever… celebrate it … yourself or with your child and let them share that with their class at show and tell. And let the world know.

Movies are NEVER going to get it right.
Books are NEVER going to get it right – all the noise about the wrong portrayal of albinism after da Vinci code and I haven’t heard any retraction of even one sentence.

But you have it right, you have the information and the knowledge, use it.
Be more wise and more vocal than Hollywood.
And use your wisdom.

.

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My story part 2

So this is the second part of my talk. I actually thought I’d lost it … not to be.

To those people here with albinism…hi. I understand your journey.

But can I say something? This conference, even though it’s called AFA beyond the stereotype…..it’s not all about us.

Oh its about albinism, but it’s not all about us individually.

You got teased and bullied? Me too. So did the other people here. But you know what? If you still have problems with that, you are allowing that ten or twelve year old school bully still have power over your life. Are you really still afraid of that ten year old?

People are insensitive. That’s because they’re human and they’re scared or unsure.

It hurts, but instead of being bitter and angry why can’t we use that emotional energy for education, for advocacy and for informing people of our condition?

I make absolutely no apology for calling it a condition. Albinism has been called a genetic mutation, a disease and an anomaly.

What would you like it to be called? Then it’s our role to educate people to that.

I overheard conversations yesterday from all round the place, most of which I have filed away in a vague part of my brain.

Some I want to answer to were comments I heard after (mother of a child with albinism) beautiful and heartfelt talk.

“Can’t she see we’re all successful?”

“Don’t they know how much we achieve in our lives?”

“How could she say she cried when her baby was diagnosed? How insulting”.

Yeah?

When I was convinced my ten day old daughter was deaf I cried for days (She wasn’t by the way it was amniotic fluid in her ear canal)

It in no way lessened my love for her or her perfection. It didn’t make her look inferior or inadequate in my eyes. I wasn’t saying deaf people need sympathy or that they are in any way “defective”.

As a parent you want the absolute best for your child and you want smooth roads to success ad no barrier to achievement. When something, anything looks like it may even remotely mar that perfect canvas you project, be it being deaf or having albinism – you heart breaks a little.

Not because of the diagnosis or the life led by those with the same diagnosis… but because your child will have a hurdle of some sort to get over before that perfect life can be attained.

“Can’t these people see how successful we are and that we are intelligent achievers?” YES YES YES

That is what gives (her) and every other parent here the courage and inspiration to get out of bed every day and fight for their child. Not because we have had challenges, but because we have faced and overcome them.

Parents, please don’t let our stories here upset or frighten you.

YOU are the connection between your child and their adulthood. YOU are the key to their self acceptance and their individual success.

By being here, seeking information, you are making the first major inroads. Thank you so much for that.. .

Some if us talk on or touch on bullying or teasing. I bet you were a victim of that also. Maybe you were the fat kid the tall kid or the nerdy kid.

Maybe you were the kid who brought garlic and olives to school for lunch every day.

When we talk about this we are in no way negating your own experience or saying ours was worse, it’s just that here, we feel safe to talk about it.

Be your child’s voice. If their school claims it has a zero tolerance of bullying, make them believe it. (I have talked to school principals on mean girls and physical violence; it only takes one voice)

Equip your child. No more than they need or can emotionally cope with at any given age or stage but empower them with information about their world and look for the good in it.

Don’t focus on the negative. They tell you your kid won’t drive? What do they know? With the advances in GPS and bioptics, etc…who KNOWS?

It’s not up to you to tell them what they can’t do, show them what they CAN.

Be open an accessible at all times. Let them know they can discuss anything when they’re ready.

Don’t pursue it or lead conversations, just be there.

Adopt a mentor. Any of us would be happy to email or chat to your child.

Join the AFA, seek us out on facebook.  If there’s anything you’re not sure of you can ask there and someone has been through it and can help.

By the way… Did you see those kids on the beach with (photographer)  last night?

Have you seen their joy and their passion? Never lose sight of that.

Your child will BE OKAY. You child will be MORE THAN OKAY.

They’ll be fabulous and beautiful and gorgeous when you are and when you allow them to be – fabulous and beautiful and gorgeous about their albinism.

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