His heart beats for people with albinism

Thursday June 13 2019

Larubi enjoys a meal with some of the youth

Larubi enjoys a meal with some of the youth living with albinism. Photos by Amos Ngomwoya. 


At first sight, he cuts a tough look and you could easily mistake him for being a loner. But when you get closer to him and perhaps engage him, he illuminates with a broad smile which instantly dispels your bias.
The 33-year-old freelance journalist walks with measured gait and speaks with composure. His words are usually laced with emphasis on equality and respect for human rights.
Robert Larubi embodies a crop of young journalists who have made freelance journalism their mainstay. To him, what matters is not just merely telling a story but rather the impact a story creates.
No wonder, his penchant for human rights has propelled him to becoming a renowned crusader of the rights of people living with albinism.

Human right
He uses a bare-knuckled approach to debunk skewed myths associated with albinism and to him, people living with albinism or any other marginalised category of people, need equal rights because they are human beings too.
“I pride myself in speaking for the voiceless and when an opportunity to tell a story of the marginalised shows up, I grab it. This is what pushes me to defend albinos’ rights and by doing so, they get a new lease of life,” he shares.

Starting out
Larubi’s love for people with albinism started two years ago when he took on a daring job and successfully investigated a story about the albinos whom he says were being sacrificed to fulfil certain rituals. The perpetrators, Larubi shares, had been misinformed that sleeping with female albinos would heal certain diseases.

Titled “Rape for cure”, the story exposed how the sexual reproductive health rights of albinos had been violated through superstitious acts.
“There is a father in Kayunga District who was killed because he had refused to sell his daughter who was living with albinism to unknown people. The people had claimed that they had been recommended to sleep with albinos to have their diseases cured. I picked interest to do that story and when it aired on television, many organisations took up the matter to weed out the act,” he recalls.
This investigative story not only won Larubi an award but also opened for him doors on the international scene where he has presented various papers which highlight the challenges people living with albinism in Uganda are facing.

Larubi’s short journalism stint has been synonymous with highlighting challenges affecting communities.
For instance, while still at Buganda Broadcasting Services (BBS) TV, he pitched camp in northern Uganda where he did a series of stories about the nodding disease, an exercise he says, gave him a big breakthrough in reporting human interest-based issues.

Having entrenched himself in advocacy work, he resigned from active journalism last year to concentrate on creating synergies that could improve the livelihood of the marginalised.
He would later join the Source of Nile Union of persons with albinism as an assistant volunteer where he and his colleagues have successfully organised campaigns to advance the demands of people living with albinism. He has since founded the albinism network, which brings together people living with albinism.


Last year, Larubi and his colleagues led a team of albinos from Uganda to participate in the beauty pageant for albinos which was organised by the Kenyan government to break the myth and stigma against albinism.
When this opportunity showed up, Larubi sought for audience with the Speaker of Parliament and asked her to flag them off.
“We wanted to show the whole world that our government supports what we were doing. I led a team of five boys and girls to Kenya and from our team, Olive Auma, a dental surgeon from Moroto Hospital, beat other contestants and became the first ever Miss Albinism in Uganda while Paul Wakibong, an Industrial Art student from Kyambogo University, became the first Mr Albinism in Uganda,” he says.

By heading the delegation to Kenya, Larubi says it fired up his resolve to work harder because the competition exposed him to many people living with albinism who shared inspirational stories.
“I was inspired by the fact that these people could do amazing things. We would therefore like to share such success stories with government so that such people can be supported through programmes to make them realise their self-worth,” he says.

Future plans
To further his cause, Larubi has since established Pats Journal Albinism Agency that pushes debates and discussions of albinism to policy makers. Asked about how he and his other colleagues identify albinos, Larubi says it is through different albinism organisations across the country. He plans to establish a vibrant advocacy organisation with an objective of advancing the interests of people with disabilities and the marginalised.

The law
The number of people living with albinism in Uganda is estimated at 20,000. According to the ugandaradionetwork, In March, Parliament gave Safia Nalule Juuko, the Member of Parliament representing People with disability leave to table the Persons with Albinism Bill, 2019.
The objective of the Bill is to provide for the comprehensive protection and promotion of the rights of persons with albinism, to provide for their registration, rehabilitation, development and well-being.

Nalule, who moved the motion to introduce the Bill, said it is also aimed at providing for the role and responsibilities of both the state and non-state actors, to designate a national and district task force coordinator for persons with albinism and to achieve equalisation of people with albinism.
Although government through the Minister of Youth and children Affairs Florence Nakiwala Kiyingi said they have included albinism in a new proposal on disability, the Speaker of Parliament Rebecca Kadaga said people living with albinism need to be protected and thereby a specific bill is necessary.

Robert Larubi was born to Alex Otim and Cecilia Aber and he is the first born in the family of eight. He attended Masindi Army Primary School, Kabalega SS and Kajjansi Progressive School for O-Level and Highland High School in Kisaasi for A-Level.
He later joined Datamine Technical Business Institute for a course in business computing. He then enroled at Umcat School of Journalism and Mass Communication to study journalism and was retained as a computer teaching assistant. He has previously worked with Daily Monitor, Chimp reports, Soft Power news website, BBS TV and NTV as a freelance journalist.