The theme for the 2023 International Albinism Awareness Day is “Inclusion is Strength”. The aim is to ensure that the voices of persons with albinism are included in all sectors of life (United Nations, n.d.).
Our research-advocacy-policy network met on June 13th to celebrate this year’s International Albinism Awareness Day, highlighting our colleagues with albinism. We acknowledge their many years of incredible work and dedication as human rights defenders to protect the rights of persons with albinism.
| Ikponwosa Ero | Project Co-Lead Executive Director, Africa Albinism Network, Tanzania/Canada |
| Nomasonto Mazibuko | Chairperson, Commission for Gender Equality, South Africa Founder, Albinism Society of South Africa |
| Dr. Elvis Imafidon | University of London, United Kingdom |
| Perpetua Senkoro | Program Officer, Tanzania Human Rights Defenders Coalition |
| Mpho Tjope | Founder, Albinism Advocacy for Access, South Africa |
| Andrews Kwame Daklo | Advocacy Manager, Africa Albinism Network, Ghana |
| Meghann Buyco | Project Coordinator, Trinity Western University, Canada |
Nomasonto Mazibuko shared with the team her wisdom and hope that mothers who give birth to a baby with albinism be provided with support and for children to be welcomed and accepted.
We have come a long way…Great things happen when people work as a team. When I started ASSA in 1993, it was taboo. I had difficulty in my school, in my township… I was told we cannot be led by a PWA… I speak today, we have worked with human rights defenders and human rights activist who defended us to the core. Today, we celebrate inclusion is strength. We are now included in the whole world. Unity is strength… As I speak to you, a child with albinism is born. But what is to make this child with albinism to be different today is that the mother will not be afraid. The midwife will not ask to say, ‘who in your family looks like this child?’ The nurse will come to the labouring ward today to say, ‘welcome to the world’. No child will be hidden behind doors because families are afraid.
Mpho Tjope sent a message about the global and collaborative nature of the albinism movement, and the strength of advocating for all people with disabilities.
I have seen more collaboration between nations, more sharing of working ideas and this increases the chances of beating the challenges faced by people with Albinism. I have also seen a strategy of uniting various organisations to form a one national Task Team, meaning more heads working on an issue and pushing for the ultimate goal of leaving no one behind. Also, I work with various disability groups and not just Albinism. This strategy means I can get representation at tables where I myself am not. For example, I would fight for the deaf community’s challenges of not being able to receive justice fairly as police stations don’t have sign language which means high chances of being misunderstood. I also fight for other impairments like others getting wheelchairs. In this way, where albinism is not in the room, someone with another impairment would speak about my challenges as in my fight. I am not just saying ‘me me me’.
Perpetua Senkoro also shared with us the positive movements she has observed in Tanzania and across Africa throughout the years she has been working as human rights advocate.
I’ve seen improvements in networking among PWA. We have the Global Albinism Alliance and Africa Albinism Network. We are more connected. I give a lot of credit to the former UN Independent Expert, I.K. Ero. She was able to improve our solidarity and also, Under the Same Sun [Non-governmental organization]. We had forums which brought together activists with albinism and members without albinism and shared experiences, talked about how to solve the challenges we go through. This has stayed until today, conversations continue. There is also growth in interest in partnership, albinism advocacy initiatives. We have also seen improvement in state action. We had albinism Action Plan adopted in different countries… Here [Tanzania], the government have also included items like sunscreen on the national list of essential medicines. We did not have that before. There is improvement in state actions towards promoting the enjoyment of rights by persons with albinism.
Meghann Buyco described her experiences connecting with her roots in the Philippines and meeting other Filipinos with albinism.
I just wish to honour those with albinism, their families, especially those living in Africa, and everyone who’s been a part of the albinism movement, and that may this day be welcoming and joyous… Our research-policy-advocacy network has been incredible to move our research and am so thankful for being a part of this. Inclusion is definitely strength. The connections have been amazing. A couple months ago, through the Global Albinism Alliance, I was connected to I believe the one and only active albinism organization right now in the Philippines, it’s called the Albinism Philippines. The founder, Maria Cordero and I grew up in the same province but somehow our paths never crossed. Not until albinism research connected us. From our work on this project and also drawing a bit from my thesis, change has been happening. Hearing from PWA, they themselves also advocating for their rights. I highlight the work of our team members, IK, Nomasonto, Elvis, Pery, Mpho, and Kwame.
It is encouraging to hear that persons with albinism are starting to see and experience positive changes and government strives for the inclusion of persons with albinism. Although much work still needs to be done, our team is committed in supporting the promotion of the rights and welfare of persons with albinism and their families.
For messages from our colleagues:
- Executive Director of Africa Albinism Network, Ikponwosa Ero, please click here.
- United Nations’ Independent Expert on the enjoyment of human rights of persons with albinism, Muluka-Anne Miti-Drummond, please click here.
Reference
United Nations. (n.d.). 2023 theme – inclusion is strength. https://www.un.org/en/observances/albinism-day
Author:
Mothering and Albinism
Mothering & Albinism 