Ikponwosa Ero remembered when she found out that she had albinism. She was 5 years old, living in her native Nigeria, and she asked her mother why she was not the same colour as everyone else.
Her mother smiled, and said that she had albinism and this made her special because God made her like this. Ero said she was ecstatic and wanted to share this news with everyone. The next day she went to school and passed by an older girl, who called her a derogatory name associated with her condition. Ero turned on her.
“Don’t call me that name,” Ero said. “I have albinism. It is called albinism.”
The older girl laughed. “So, what’s the difference? You are saying that as if it’s a good thing!”
But for Ero, having albinism has been a good thing. It showed her the power of having a loving and supportive family that helped her to succeed, despite derision outside the home.
Inspired by her personal experiences, Ero has spent the last seven years working specifically on issues regarding the human rights of people with albinism. She has been the international advocacy and legal officer for Under the Same Sun, an NGO with a focus on albinism. She has also published extensively on the issue, including a handbook on human rights for people with albinism, and a guide on albinism for teachers and educators working with those who have the condition.
And Ero continues flourishing today: she is now the first ever Independent Expert on the enjoyment of human rights by persons with albinism. Ero was appointed by the Human Rights Council and took up her post in August.
“After years of work on the issue in the human rights arena, and having lived with albinism, I considered that I had a unique combination of skills and experiences which could be put to good use at the service of my fellows with albinism,” she said.
The position of Independent Expert on Albinism was created by the Human Rights Council as a way to focus attention and provide much needed information and discussion on the issue. As the expert, Ero’s duties are wide ranging and include identifying, exchanging and promoting good practices; engaging in dialogue and consulting with States and stakeholders regarding the issue; and gathering information on violation of the rights of those living with albinism.
People with albinism often face great challenges to their rights such as being denied jobs or places at school and also extreme violence and loss of life as there is a lucrative trade in body parts of persons with albinism in some countries for use in witchcraft. Ero said as a child and as an adult, she faced problems, including “relentless public name calling.”
“I used to be so terrified to go out to public places because a multitude of children would gather and sing many songs about albinism to me,” she said. “As an adult, things improved greatly. That said, ignorance about albinism is still very strong - which means ignorant questions and reactions remain.”
Ero said the new post as Independent Expert will help provide visibility and awareness of the condition. She has a number of plans for the mandate, including working with States to identify and implement specific measures to end attacks and also to create a Model of best practices on albinism in consultation with relevant stakeholders. In these and other ways, Ero said she hopes to help demystify the condition.
“This is most important, where mystification of the condition has led to physical violence,” she said. “The human rights perspective will be helpful because it spans so many areas affecting persons with albinism including the most fundamental rights to life and security of person, non-discrimination and equality. For a person with albinism, nearly all of their most fundamental human rights are at risk.”
21 August 2015