Over the weekend I watched a story highlighting the plight of people living with albinism in Tanzania.
Sunday Night - Albinism Story

image – Sunday Night

I have been aware of this issue for some time now but it was the first time I had seen a story broadcast on commercial TV, here in Australia.
From the comments on the program’s facebook page, it was the first time many people have been made aware of the ongoing hunting and persecution of people with albinism in many parts of the world. And they were understandably shocked and horrified.
I’m pleased to see that more attention is being paid to this issue. It’s about time.
The UN declared June 13 International Albinism Awareness Day with the resolution “to protect and preserve the rights of persons with albinism to life, dignity and security, as well as their right not to be subject to torture and cruel, inhuman or degrading treatment or punishment...”
People with albinism have been subject to systematic discrimination, persecution and abuse since the dawn of time. The human race has never been very accepting of difference in any form, has it?
It seems in parts of the world where the differentiation is more stark, as in sub-Saharan Africa, the situation has never evolved beyond the early beliefs that we all seemed to have once shared.

  • That people with albinism are the personification of the devil.
  • That their body parts contain mystical properties which can bring good fortune.
  • That they are cursed.
  • That the condition is contagious.

In the western world, people with albinism are still judged, bullied and discriminated against, although the incidence of physical and ritualistic violence is rare. It’s sad that people with albinism are judged just because they look different due to the lack of melanin in their hair, skin and eyes.
DaVinci Code - Silas

Remember the evil albino assassin Silas from the Da Vinci Code? (image source)

It doesn’t help that popular culture perpetuates certain myths (such as the pink/red eye myth – thanks Hollywood).
It doesn’t help that the condition can be visually confronting, especially if you have never seen someone with albinism before.
And it certainly doesn’t help that that condition is so rare – consequently, many people only know of albinism from the movies or TV.
So, unless you meet someone with the condition, most people would not take the time to research it to find out the truth for themselves. That’s just the reality of the modern world.
I know that was me before my son was born with albinism.
Unfortunately, this general state of misunderstanding can have deadly consequences in less developed parts of the world.
According to the UN, as at October 2014,  over 340 attacks against persons with albinism, including 134 killings, had been recorded in 25 countries. Since then, further vicious attacks have been reported in Tanzania, Burundi, South Africa, Zimbabwe and Malawi.
As shown in the Sunday Night segment, survivors of these attacks in Tanzania (as well as those abandoned by their families due to widely held superstitious beliefs) are forced to live in prison-like conditions in a bid to protect them from further harm.
Unfortunately, these centres are often not equipped with the resources needed to help people with albinism. Staff are not adequately trained, sun protection is not always provided and little consideration is given to the vision issues that accompanies an albinism diagnosis.
Furthermore, in many cases living conditions are poor and unsanitary. There have also been reported cases of abuse and discrimination, even within these supposed safe enclaves.
Sadly, this reflects the treatment of those with albinism in the general community, as the condition continues to be associated with so many myths and superstitions.
If babies born with albinism survive infancy, they are often targeted for their body parts. If they survive these attacks, they are often uneducated due to discrimination against them, compounded by their vision impairment. As a result, they are unemployable or are forced to work outdoors as uneducated labourers, without adequate sun protection.
It’s no surprise then, that many people with albinism do not survive beyond 40 years of age in these parts of the world.
While the situation for many is dire, more and more is being done to help people with albinism stay safe and enjoy a longer and better quality of life. The UN’s step to declare an international day to promote albinism awareness has provided many with a platform to debunk the myths and address the superstitions.
Standing Voice (albinism)

image – Standing Voice

As this story highlighted, organisations such as Standing Voice, are actively working to protect those with albinism. They are encouraging them to complete their education and helping them do this by providing glasses and adaptive visual equipment, such as monoculars and magnifiers. This allows people with albinism to see the world around them clearly, for the first time.
In addition, other organisations such as Under the Same Sun are also working to help those with albinism attain an education and achieve employment. They are helping to dispel the myths in the community so they can start changing general perceptions of those with albinism. Hopefully this will result in less attacks, fewer cases of abandonment and, eventually, greater community acceptance.
UTSS Albinism

image – Under the Same Sun

It’s going to be a long road ahead. But there is hope for the thousands of people with albinism who are currently subject to the worst sorts of persecution. I really do hope to see real and lasting change in my lifetime.

If you are interested in finding out more about the non profit organisations helping people with albinism throughout Africa, these sites are a great start:

Standing Voice

Under the Same Sun

If you are interested in finding out more about albinism organisations fighting for the rights of people in individual countries, please refer to the sites below:

Albinism Society of South Africa

Tanzania Albinism Society

The Albino Foundation (Nigeria)

Albinism Society of Kenya

Association of People with Albinism in Malawi

And for more information generally about albinism from an international perspective, these sites are a good reference point:

World Albinism Alliance

OHCHR Albinism

You can also catch up on my previous posts, demystifying albinism, via the links below:

Albinism 101

The Power of Popular Perception

Seeing Red

Shades of Pale

Skin Deep

The Real Face of Albinism

Real Life Albinism Role Models

International Albinism Awareness Day

What He Sees

He’s Very Blonde, Isn’t He?