Reduce Albinism stigma and discrimination – Olive Namutebi

Olive Namutebi

Olive Namutebi, Executive Director, Albinism Umbrella revealed to the guest that she was inspired to establish an organization to tell and capture the beauty of people with albinism in Uganda, besides working closely with albinism fraternity across Africa.

Albinism, a genetic condition that leads to little or no pigment in the eyes, skin and hair

According to Olive Namutebi, growing up she was afraid to walk on the streets of Kampala and in her village because of superstitious beliefs and this affects hundreds of other people with albinism who are often stigmatized and discriminated

‘Women face double discrimination but sharing their stories is one way to curb the myths’

With a seed grant from Oxfam, Netherlands her organization, Albinism Umbrella has been in a position to offer the most basic support and information on the need of persons with albinism as a document in a special research project ‘Spatial Mapping’.

Which was launched at Hotel Africana was key in determining the needs of persons with albinism, using preliminary data on the numbers of persons reached given the fact that there are no quantitative data on the number of people with albinism in Uganda.

‘We reached out in ten districts in Eastern Uganda, mapped out homes of people with albinism, the closest health care services, security unit and other support services using GPS so they can easily access help’

Shocking in our findings, over 78% of persons with Albinism never knew what causes the condition and where gullible to the myth that they are ghosts, they do not die and several other misconceptions a provocation that instigated us to take on a toll to create more awareness and creating friendly spaces for them to discover who they are through the numerous activities we engage in always, Olive said,

Adding that, progress has been realized with one lady living with Albinism now working within the confines of the Parliament Uganda.

Talking about Sexual Reproductive Health and Rights for people living Albinism, Olive noted that this is still a silent talk while women are abused, raped and infected with HIV/AIDS through no fault of their own with the assumptions that when one sleeps with a woman with albinism he will get cured of the deadly virus.

This is a dehumanizing process and people need to know that albinism is a chance and not a choice, Olive Namutebi said

Joanita, one of the girls with albinism revealed how she repeatedly suffered stigmatization at a health center in their village because of the colour of her skin. Besides being raised by a single, she shared with the audience how her father ran away from home; saying he could not live under the same roof with a kid looking like her. On finding her first job, she was never welcomed even when the boss was okay with her, the customers where negative an act that prompted her to resign from her work and now sensitizing the community about albinism.

Young people with Albinism face challenges in accessing health services like family planning this cuts across the whole disability fraternity, especially how people really want to treat them.

Because of such, they are left with no option but being exposed to great health complications and rights being abused. 

Young people with albinism in Uganda lack access to safe and effective health services. But these challenges need to be amplified to the people who are often unaware and there is also a need to empower people to have a right to make choices about their own health and sexuality

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Frank Byaruhanga is a human rights activist with years of experience in community dialogues, digital communication, advocacy and digital campaigns. He specializes in Media Relation Work, Management and Training with sufficient knowledge in Governance, Accountability, Sexual Reproductive Health and Rights, Youth-led research, Content developer, Creative Activism, Social Media Management and documentary photography.

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