Bastina Agostinho from Nampula Province is a Mozambican adolescent (18 years old) with albinism, a rare, non-contagious, genetically inherited difference present at birth. Albinism results in a lack of pigmentation (melanin) in the hair, skin, and eyes, causing vulnerability to the sun and bright light. As a result, most people with albinism are visually impaired and prone to developing skin cancer. There is no cure for the absence of melanin (United Nations, 2022).

Bastina’s mother abandoned her when she was young because of her albinism. When her father passed away, she went to live with her grandparents.

In spite of the challenges she faced in her early childhood, Bastina is currently an empowered young woman, thriving in high school with friends that support her. “I have the right to decide; to choose my friendships and what I feel comfortable with,” she states. 

It is estimated that there are 20,000 to 30,000 Mozambicans with albinism living throughout the country, though the number is likely to be higher. 

Bastina is one of many youths with disabilities participating in UNFPA-supported national networks and organizations for persons with disabilities. Her activism and inspiration to others led to her being profiled as part of the Wanted: A World for One Billion Exhibition that took place as part of the Global Disability Summit in 2022. 

As a member of these networks and organizations, Bastina is one of the beneficiaries of the United Nations (UN) 3-year joint program, Promotion and Protection of Persons with Albinism, financed by the Government of Norway with more than $731,000 USD (6,000,000 NOK), and implemented by UNESCO, UNFPA, IOM and OHCHR in partnership with the Government of Mozambique through the Ministry of Justice, Constitutional and Religious Affairs, Organizations of Persons with Albinism (OPAs), and the TVET institutions (IFPELAC).

The project will combat stigma and discrimination against persons with albinism through awareness-raising campaigns and capacity building of stakeholders including government, civil society, law enforcement officers, media, community leaders and service providers, while providing professional training for PWA and offering business startup toolkits to address their exclusion from quality education and the professional and labor market.

“Being a woman is not easy, but it is not difficult either. To be a woman is to be everything: a friend, a partner, a mother, a teacher – everything. It is not easy, but it is not difficult. Everyone who is a human being needs another human being,” Bastina says.

Hear more about Bastina’s optimistic perspective on life by watching the short video below:

The project will increase access to health, protection, and juridical services for persons like Bastina, while also strengthening evidence-based decision-making regarding the human rights and participation of persons with albinism in the development process in Mozambique.

Persons with disabilities, particularly women and girls, are more likely to experience gender-based violence and have less access to sexual and reproductive health and rights information and services. Through this project, UNFPA aims to promote the human rights of women and young persons with disabilities and albinism, by placing access to sexual and reproductive health services, information, and education for persons with disabilities at the core.

ABOUT THE JOINT UN PROJECT:

Funded by the Government of Norway, the project began in 2021 in the provinces of Maputo, Zambézia, Tete, and Nampula, and is being implemented through the Multi-Sectorial Group on Albinism, led by the Ministry of Justice. 

United Nations Educational, Scientific and Cultural Organization (UNESCO), International Organization for Migration (IOM), the Office of the United Nations High Commissioner for Human Rights (OHCHR), and the United Nations Population Fund (UNFPA) are the four UN agencies supporting the implementation of the project that will directly benefit approximately 300 people including persons with albinism who are members of the concerned PWA civil society organizations, community leaders, law enforcement officers, health care officers and members of reference groups on human trafficking.