Rising above skin condition: Jairus Ongetta was crowned the first Mr Albinism Kenya in 2016

When Albinism Society of Kenya held it first pageant in 2016, Jairus Ongetta, then a music student at Kenyatta University was crowned Mr Albinism Kenya. Under the theme, “Beauty Beyond Skin,” the event, which was organised by the Albinism Society of Kenya was aimed at changing how people living with albinism were perceived in the society. 

“Being crowned Mr Albinism was one of his greatest moments ever,” narrates his elder brother Stephen Ombati.

“Finally, he felt people living with albinism had achieved a milestone. For a long time, some people never imagined that people like us could excel on platforms such as modelling, or pageantry,” he continues. 

With the award, Jairus immersed himself in projects focusing on children and albinism. 

“My focus is on children so as to bring up a generation that is more confident, who can find strength in what they are good at.

Some people living with albinism have been raised by single parents and we desire to empower these children to have an asset they can cling to. With a better self-esteem, we will empower the next generation,” says Jairus. 

Though the two brothers have albinism and are both artistes, they have an age gap of three years.

Also, while Stephen has interest in writing, Jairus is currently more into spoken word, fashion, film and athletics.

He is a lead in Mime Kenya, a group of artists who use dramatic expression through gestures to minister and entertain) and the founder of the event ‘ The Taste Of My Skin (Toms)’, on social media, where he shares about his day to day experiences and his perspectives on societal issues particularly on matters that others can relate to. 

“He initially used the platform to create awareness on albinism, but nowadays, he writes on his experiences.

He was inspired by the need to share his story and thoughts with the world. We would exchange ideas together and then we discovered that the format for both songs and spoken word is fairly the same. So, we sing when it’s music and talk when it’s poetry,” he adds. 

Their childhood was fun, as Stephen describes it. Their mother played a vital role in ensuring that they were disciplined and grew up knowing God. She also ensured that they never felt different from any other children. 

Though, they managed to live a normal life, Stephen has recollections on the few times they faced discrimination simply because of their skin. 

“There were a few times when we faced discrimination from other pupils, the community and teachers who didn’t understand albinism and the challenges we face such as visual problems. So, we had to sit close to the black board to copy notes.

This was for a few years before our mum took as to a special school in Siaya.

Then there was rise in the myths, stigma and discrimination coupled with ritual killings in a few African countries such as Malawi and Tanzania and that too brought tension even here in Kenya.

That’s what made us have the passion to create awareness on the subject, that people living with albinism are just like any other person and are just born with no or little pigment in their skin, hair and eyes,” he shares.

As for discovering their talents, Jairus knew he was good at music when he was in Class Five at St Oda Primary School in Siaya, where he would participate in music and drama festivals.

They both attended Salvation Army, Thika high school, a special school where Jairus was part of a singing group and participated in nearly all music functions.

He was happy to have supportive teachers. “Phoebe Mwaura, a music teacher moulded and nurtured us a lot.

There was another teacher, a Mrs Kiarie, who used to go to different secondary schools and she’d request to go with my brother and I on different occasions to perform.

That’s how Jairus got to perform in different schools and this helped us grow and build our audience,” narrates Stephen.

Overcoming challenges

However, the brothers have an issue with special schools. “You see the issue with being in a special school set-up is that you are placed in some sort of a box.

You don’t encounter much competition and challenges since you mostly interact with people who are challenged in one way or another.

But after you are done and go to face life, you realise things are different and it’s not like the world cares as much.

So preferably, integration in the society for us would have been the better option,” Stephen explains.

After secondary school, the two brothers went their separate ways as Jairus, or Jay as he is called, went to Kenyatta University to study music while his brother joined the National Youth Service and later on studied information technology. 

He had enrolled for a bachelor’s in communication and media studies, but then changed as he desired to study an artistic course.

At Kenyatta University, Jairus had his first spoken word event.

“There wasn’t any restriction, he was lucky that he had a music background from secondary school.

He participated in culture week, solo night (singing) and modelling. He was also Mr Special Needs in his first semester.

From there he gradually grew in his craft and at some point had a radio show at KU FM,” he says.

In addition, life at the university felt normal as for the first time Jairus interacted with other people. It was while at Kenyatta University that he won Mr albinism Kenya.

In 2017, he received The Poet Of The Year award at Kenyatta University. In 2019, he was feted as the Standing Strong Champion on Albinism Awareness Day.

In the same year, his film dubbed, Misfit got a silver dough award at Zanzibar international film festival and another called Dear Family won the people’s choice category at the Alliance Francaise. 

“I’m happy and proud of each and every achievement that Jay has because I know that he works hard.

Whatever he sets his mind to do, he accomplishes. In future, we desire to collaborate and tell our story to the world,” says Stephen in conclusion.