Myths upon myths are told and retold in a bid to describe people with albinism in Rwanda: They are cursed, it is claimed.

Their families are being punished by ancestral spirits. Their body parts make potent charms for riches and success. Name it, they are it.

People with albinism are not spared when it comes to names that are both derogatory and dehumanising. They are called “Nyamweru”, “muzungu wapfubye”, “kivejuru”, and “albinos.”
Yet albinism is a genetic condition that is caused by a recessive gene, carried by both of a person’s parents.

That person’s body then has little or no ability to produce melanin, which colours their skin, hair and eyes.

As a result, people with albinism are noticeable for their white skin, white hair and lighter, even blue, eyes.

People with albinism are especially prone to skin cancer and they tend to suffer from a range of eye problems.

But other than this genetic condition, people with albinism are no different from anyone else. They are as capable as anyone else of living productive lives, of having “normal” (that is, regularly pigmented) children and of contributing to society as a whole.

Unfortunately, and regrettably so, they are denied professional opportunities by people who fear them, and they are rejected in some work places just for their skin.

While Rwanda has made great strides in building an inclusive society, reported cases of discrimination take the shine off these achievements.

Despite being accorded full rights in the Rwandan constitution, it is a shame that people with albinism continue to bear human rights violations than most.

Denied opportunities

They are denied opportunities and face abuse and violence because of their appearance.
Calling them names not only dehumanises and disrespects them but also exposes them to danger.

Tackling this issue requires more than policy; it requires specific empowerment programmes to ensure and promote their equal participation in society.

There is also a need to launch public awareness campaigns to educate the population about genetic disability to help families understand that giving birth to a child with albinism is not a curse, rather, it is a medical condition.

This idea of it being a curse leads to many families being marginalised in their communities caused by misunderstanding, deeply entrenched prejudices and stereotyping. And, perhaps, more importantly, educating the public, collecting data and researching the extent of discrimination to determine appropriate interventions.

Their support groups also need more financial assistance to improve their capacity to deal with the issues that their members face. It is essential for us to be bold and untiring in our determination to see all people with albinism enjoy their full human rights.