Just like any investigative journalist, Pat Robert Larubi was chasing people and organizations in search of special feature articles. When he was not writing about politics, he was using his writing skills to highlight injustices including human rights and ways to resolve them. It is while solving these injustices that he was enticed into one of East Africa’s major discrimination challenges, Albinism.
Today, Pat works with people with albinism in Uganda and across the East Africa community. With his storytelling skills backed with the new media, Pat is breaking myths and misconceptions surrounding people living with albinism– a congenital disorder that causes the skin, hair, or eyes to have a complete or partial absence of pigment.
What drives him?
According to Pat, he was motivated by the need to shed light on the plight of people afflicted by the genetic disorder.
“The continued persecution and killing of people with albinism across Africa is being perpetuated due to the high level of ignorance. My mission is to create awareness about People with Albinism in Africa with a call to respect their basic human rights”.
Through his platform- Pats Journal- a media and human rights non-governmental organization, he is working with like-minded organizations to create a movement that will support people with albinism to speak out on their experiences and challenges they face. By so doing, Pat believes that the negative stereotypes resulting in untold suffering among people with albinism and their families will reduce tremendously.
“I developed an urge to push for inclusion, rights, and protection of persons with albinism as media personnel after realizing their, voice especially on what affects them and their families were missing in the mainstream media.”
Perception changing
There is no doubt that agenda-setting is helping change perception as well as practices against people with Albinism.
“I feel {that}the more we talk about Albinism, see them in public sphere, share, talk and encounter their life experiences, the better we change mindsets from thinking in abstract to reality”
Moreover, Pat hopes that other countries will emulate the set precedent for inclusive media reporting.
He strongly argues that albinism is not the problem, but the perception that people have on those with albinism is. So, by simply changing perceptions in the society, people with albinism will be accepted at home and the society at large. Besides, he hopes by so doing, the recurring attacks, kidnaps for ritual, mutilation, stigma and outright discrimination of persons with albinism will subsidize, and ultimately stop.
Beauty contest
“Ultimately, my goal is to see that one day, all people with albinism are free from all forms of socio-economic and political injustice.”
Motivated by this notion, last year, Pat led a group of 10 Ugandans to take part in the first ever Mr and Miss Albinism East Africa. The competition, which was organised by The Source of the Nile Union of Persons with Albinism, supported by Albinism Society of Kenya, brought together 30 contestants from Uganda, Kenya, and Tanzania.
As of now, the plan is to strengthen the organization’s human rights advocacy plan, lobby for support, and build strategic and strong partnerships with like-minded agencies.
Pats Journal was launched on June 13, 2018 by the Rt. Hon Rebecca A. Kadaga, the Speaker of the Parliament of Uganda at an event to mark the third international albinism awareness day celebrations in Jinja district.
Known as the black Albino by his close friends, Pat continues to work closely with people across East Africa, using the platform to share experiences.
He concludes that issues affecting persons with albinism are similar across the region. If we are to achieve the United Nations Sustainable Development Goals, we need to continue presenting facts and highlighting issues surrounding people living with albinism.
Story as narrated by Pat Robert Larubi, an independent investigative journalist, blogger and award-winning disability rights activist who has been covering a number of issues surrounding health and disability.