Joy Odigie On Living With Albinism, Overcoming Stigma & Empowering Others

Growing up, Joy Odigie did not understand the term albinism despite living with the condition. Until one time in JSS 3 when her teacher taught her hereditary and albinism was discussed. This knowledge drew her to a different pattern of existence because that was when her life changed.

“Some classmates saw it as an opportunity to mock me. But before then, I didn’t see myself as different because I could perform like everyone else. I only noticed that I couldn’t see from afar and I thought it was normal because there were dark-skinned people using glasses too to correct their vision”, Joy said.

Albinism is a rare genetic condition caused by mutations of certain genes that affect the amount of melanin your body produces, making the person unusually white. There are about two million people living with albinism in Nigeria. 1 out of every 8 persons carries the gene, and 1 out of every 15,000 people are living with albinism in Africa.

People living with albinism face a lot of discomforting challenges due to the colour of their skin. Joy said she was a teenager when she became conscious of her condition. The myths surrounding albinism also contribute to the discrimination people with abinism face. “They say people living with albinism have supernatural powers. I never had this and if I had, I’d have used it to eradicate diseases and poverty. Some also say we are cursed or evil and can be used for good rituals. These are so untrue, but it is common for people to say. I was surprised when a lecturer told me I had supernatural powers,” Joy says. 

Joy Odigie’s experiences reflect how society discriminates against people living with any form of specialty. But amidst this, Joy excelled in school and graduated from the university as the best female student in her faculty. She describes her school experience as “challenging” and was able to manoeuvre through due to confidence from friends and family who encouraged her to see herself beyond her skin colour. She also gained enough encouragement from her paternal grandfather who was an educationist and a resourceful person. This propelled her to not only aspire for greatness, but also be a source for encouragement to people living with albinism.

The Nigerian government has a national policy on albinism which states the justification for the condition and the punishment for discriminating against them. But despite an appropriate policy in place, victims still face dire experiences. Joy wants to change that. “Albinism is not a curse or disease that reduces life span. For me, it’s not a disability even though people and organisations see it as that. I believe disability has to do with the individual or how you feel. I have hobbies, I’m into social work and I have an NGO for people with albinism to ensure they see beyond their limitations and enlighten them on skincare to reduce skin cancer.”

Joy is also a journalist and writer, and  has a book club for kids where fun and educational books are shared and they get to play games. With her registered NGO, she has helped link several people living with albinism, skin cancer or eye problems to doctors for surgeries, and on subsidised payment too. She is now working on an initiative to make sunscreen available for people living with albinism in Edo State and across the country.

Joy is not alone in garnering awareness for albinism. There are several organisations like The Albinism Foundation, Initiative for Advancement of the Albinism Cause, White Angel Foundation and others providing support for people living with albinism.

Joy says, “Some of the persons that died of skin cancer were due to ignorance and not knowing how to take care of their skins. What people living with albinism need is the awareness about their condition, to understand how to protect their skin by avoiding the mid-day sun.” This is what Joy is doing with her foundation – helping people living with albinism live their best lives; providing resources for people living with albinism and generally being an inspiration to people living with albinism and society at large.