"Living In The Shadow" AmsterdamUnder the name ‘Living in the Shadow’ different experts on albinism discussed the human rights of people with albinism on February 9th in Amsterdam, the Netherlands. Lisa Luchtenberg, chair of Oogvereniging Albinisme (Dutch patient group for people with albinism), held a short presentation and was part of the panel discussion during the albinism session. ‘Inclusion’ was the key word of this afternoon.

Human rights violation still takes place in 2019. Discrimination of people with albinism happens all over the world in different degrees. The issues in parts of Africa are horrifying: People with albinism are segregated from society and live under the threat of violence because of superstition.

Photo impression Tanzania
Sacha de Boer, a Dutch photographer and visual storyteller, opened the session by showing pictures of children with albinism in Tanzania. She shared her touching stories about the lives of these different children. Her book was for sale after the session.

Albinism in the Netherlands and abroad
Lisa Luchtenberg represented the Dutch association for people with albinism, Oogvereniging Albinisme, and Albinism Europe during her talk. This Dutch association aims to improve the lives of people with albinism in the Netherlands via advocacy, providing information and stimulating contact between people with albinism and their families. They organize different events throughout the year. On the 30th of March 2019, the Oogvereniging Albinisme organised an event on Albinism in Africa.
In September 2019 Lisa climbed mount Kilimanjaro to raise awareness on the issues people with albinism are facing in parts of Africa.

During a panel discussion, Lisa Luchtenberg (Chair Oogvereniging Albinisme), Grace Rububula (Project Manager ALINC at KCBRP) and Jonathan Pedneault (Emergencies Researcher at Human Rights Watch) shared experiences, gave ideas and advised what you can do yourself on human rights issues. The conclusion of this session was ‘inclusion’. All over the world people with albinism face problems with inclusion on different levels. But step-by-step the situation improves thanks to the different organisations working on these discriminations and stigmatisation.

What you can do against human rights violation
Besides supporting organisations working on these issues financially or volunteering, you can do much more. One thing you could do is talk about these issues. Many people don’t know what happens with people with albinism in parts of Africa or don’t know what albinism exactly is. Talking and discussing this with friends and family will make a difference. And think about the way you communicate about albinism. The discussion on ‘albino’ versus ‘albinism’ is an endless one. By using the words ‘a person with albinism’ you emphasize the human part of a person with albinism. Using the word ‘albino’ suggests you’re talking about an object instead of a human being. Communication with the words ‘person with albinism’ helps to decrease discrimination and stigmatisation, especially in Africa. The world is globalizing, so you have much more influence than you think.

Human Rights Weekend
Every year Human Rights Watch organises HRW: Human Rights Weekend. During this weekend the general public can educate and reflect on themselves about human rights issues via different themes and activities: panel discussions, presentations and documentaries. The main language is English. This year one of the sessions was dedicated to albinism in Tanzania and abroad.