Welcome to my ongoing series on demystifying albinism. Before you get settled in I recommend you check out my previous posts on the following topics:
- Demystifying Albinism: The Power of Popular Perception
- Demystifying Albinism: Seeing Red
- Demystifying Albinism: Shades of Pale
This is my boy, Gilbert. He has oculocutaneous albinism which has led to a lack of pigmentation in his hair, skin and eyes. He also has a moderate vision impairment but don’t ask him about his vision because he’ll tell you he can see just fine. Well that’s what he told his ophthalmologist last week for this regular vision checkup. I guess when he has nothing else to compare it to, what he sees is what he sees. And it’s fine to him.
Gilbert likes reading, watching DVDs, playing imaginary games, watching sport (he loves keeping score and analysing the statistics), eating junk food, jumping on the trampoline, writing creative stories and wandering around at his leisure at home. He is 11 years old and attends his local primary school in a mainstream class. Sounds like a fairly typical 11 year old, doesn’t he?
He also wears a broad brimmed hat all year round, constantly reapplies sunscreen (when he remembers, he is a boy after all) and chooses to wear protective clothing to help protect his skin. He receives a few hours of itinerant vision support a week and accesses services as required through Vision Australia and Guide Dogs Australia but that’s really the extent of the assistance he needs at the moment for his albinism.
He may look different on the outside but he is just a normal 11 year old boy, chafing at the demands we place on him and slowly learning to find his place in this big, amazing world.
Albinism really is only skin deep. The condition only truly affects the level of melanin in the body. Having little or no melanin will result in reduced or no pigmentation in the hair, skin and eyes and some level of sun sensitivity and vision impairment. In all other respects a person with albinism or PWA is really no different to anybody else.
Despite this truth, persistent and damaging myths surrounding albinism all stem from the visible difference that defines the condition. The visible difference has, somehow, been transformed into other differences that somehow set PWA apart from the general population. Myths abound contending that:
- PWA possess magical properties and their body parts can be ground down to bring luck to others
- Having sex with a PWA can cure HIV
- PWA are sterile and cannot have children
- PWA are the result of inbreeding, interracial relations or incest
- PWA have been cursed or punished
- Albinism is contagious
- PWA are less intelligent that others
- PWA are evil
- PWA are nocturnal and can only go out at night
All these statements are untrue.
It is unfortunate that most PWA find themselves unwillingly defined by their appearance. Visible difference always draws interest as well as misunderstanding and worse… In more extreme cases, PWA have been subjected to discrimination, cruelty, torture and even death. Just because they have a genetic condition that has resulted in little or no pigmentation in their hair skin or eyes.
In other words, purely because they look different, through no fault of their own.
The truth? Albinism is really only skin deep. Look past the visible difference and lack of pigmentation and you will realise that everyone is the same. We all have the same internal organs, working hard to keep our bodies going. We all require oxygen to stay alive. We all need to eat and drink to remain healthy. We all have our individual interests, passions, hopes and dreams.
PWA are really no different to anyone else.
Yes, their vision can be significantly affected by the lack of melanin present during the development of their eyes. This deficiency leads to photophobia (sensitivity to glare), nystagmus (rapid and involuntary movement of the eyes), poor depth perception and issues with focus and with distance vision. To understand some of these challenges, check out this video to really understand what a PWA ‘sees’ every day.
And yes, issues with the skin are real and enduring. With little or no melanin present to help protect the skin from UV rays, PWA are at risk of sun damage, even in the depths of winter. Protective clothing, sunscreen and a hat need to be worn all year round to try to prevent skin cancers forming later in life. It is well documented that PWA have a much higher chance of developing skin cancer than others in the community – with little to no natural protection from the sun, this comes as no surprise.
In the end, we are all unique. We all look different. We all have our individual quirks. Yet, underneath it all, we are all the same.
As a society we owe it to everyone with a visible difference, not just those with albinism, the right to live their lives, find their place and be safe, without fear of discrimination, violence, hatred or misunderstanding.
Albinism IS only skin deep. Just ask my son…