I lost my eyesight, not my vision: The moving story of Jonah Simba

When he was 13, Jonah Simba was diagnosed with retinitis pigmentosa, a rare degenerative eye disorder that led to complete blindness at the age of 25.

At 40, and working with the Kenya Union of the blind, he understands the value of the white cane, which is largely inaccessible to the masses due to high import costs.

In partnership with others, he is advocating for the manufacture of white canes in Kenya. He tells Christine Odeph more

One would say yours has been ‘a journey to blindness’. How did it all happen?

In 1991, after a relatively normal childhood, I began experiencing challenges with my sight. I was in Class 7 at the time, and in boarding school. Initially, I had trouble seeing at night. My mother noticed that during the holidays and took me to an ophthalmologist. It was then that I was diagnosed with retinitis pigmentosa.

It was a hard pill to swallow for us to hear that nothing could be done to save my sight but we had to carry on. When I was Form Two, the problem got worse and I had trouble during the day.

My vision seemed to be ‘narrowing’. If I greeted a person, I could see their face but not their hand. It was as though I was looking at the world through a (clear plastic) soda straw. When I was in Form Four, my sight had deteriorated and my vision was blurry.

It was a confusing time for me because I was in-between blindness and sight. I could read perfectly but when walking, I would collide with people or obstacles. Some people even thought I was pretending that I could not see.

What stuck with you from the period you finally lost your sight?

Because of what I had gone through psychologically for several years, I became spiritual. I wanted to understand God and my purpose in the world, so I decided to pursue theology.

But in August 2003, halfway through my studies, I completely lost my sight. Even though I knew that day would come, I was still shaken.

After I received my certificate of blindness from Kikuyu Hospital, the reality sank in and I was low for two or so weeks.

By the grace of God, a woman named Irene Gateri volunteered to become my sighted assistant to enable me complete my studies. She dedicated two years of her life to my studies and I never paid her a cent.

You never forget that kind of kindness.

Shortly after receiving your certificate of blindness you travelled to Rwanda for a mission...

I felt like my dreams were no longer possible, but a good friend who was a pastor at the college I was studying told me: “You can still serve God and humanity with or without sight; all is not lost”.

He invited me to take part in a mission to counsel and encourage victims of the genocide.It was my first time flying out of the country. The experience for me was therapeutic.

As I listened to others who have been through so much and encouraged them, it became apparent that we were helping one another.

How did you readjust to your new life?

My faith made it all possible. To date, I believe that my destiny is divine. It doesn’t matter if I don’t have function in parts of my body or if I lose something else. In 2006, after I graduated, I started learning Braille and how to use IT as a sightless person. Since IT opened my world to more possibilities, I decided to focus more on that. In 2007, I started my organisation then known as Purse International. When I got married, I changed the name to Disability Treasures to accommodate my wife, Purity Barbra as a co-director.

How did you meet your wife?

One Sunday in 2008, I was on my way to church in Buru Buru. I was asking a bus conductor to assist me to cross the road and a lady offered to take me to my destination.

There were no buses when we got there. Since I was already late, I asked her if I could go to her church. I ended up networking at her church, and attended more services, which boosted the work I was already doing.

We lost touch at some point but reconnected in 2012 after my mother passed away. Finally, I proposed to her in 2013 and our life together officially began. We have two sons.

What did you hope to achieve with Disability Treasures?

I started it to give hope to the disabled, especially the blind. Ours is to improve a blind person’s capacity to work or study. Through sponsorships, we offered counselling services to people who had either lost their sight.

We taught life skills lessons and trained people on using JAWS (Job Access with Speech) as well as Braille and other necessary IT skills.

Along the way, we partnered with the Ministry of Education to train teachers from special schools. It hit us that most of the teachers didn’t even know Braille and weren’t empowered to handle blind children. We also have resource centres for organisations whose members are blind.

What inspired this dream for the white cane manufacturing factory in Kenya?

The white cane is a very basic yet crucial tool for a blind person. It gives us identity and mobility, which translates to security. Many people in Kenya use their children or family members as a white cane. Others sharpen sticks. A proper white cane is reflective.

After partnering with the Ministry of Education, I came into contact with the Kenya Union of the Blind (KUB), which I am a part of. I discovered that the KUB has a registry of all known blind persons in Kenya. We are also working with Safaricom on how to leverage IT to empower the blind.

Registration is ongoing for any and all blind persons in Kenya to join the union so they can access all the tools and information available. Many basic needs of the blind or partially blind are largely unmet due to lack of access. In many cases when organisations or the government think of people with disability, they go to a person in the wheelchair.

Our research showed that the cost of a white cane is too high, meaning too many people don’t have one. You can’t simply walk into a supermarket and buy it. In fact, the best way to put it is that there is a white cane famine in Kenya.

The white cane I use is a gift I received three years ago from a UK-based friend and I am one of the privileged few. You have to source a proper cane from South Africa or the United Kingdom at a cost of Sh10,000. Cheaper versions come from India but cheap means lower quality and either they cannot be folded, they are not reflective or break easily.

KUB has a paybill number running under the Adopt a White Cane campaign to support our initiative to give white canes to at least 100,000 people and to set up a factory. We would be creating canes for different prices.

We call upon Kenyans and friends to support the initiative. It would be the first in East Africa; meaning our neighbours from Uganda Tanzania, Rwanda and Burundi will look to us first.

It would also create jobs, especially for the blind. We want to get to a point where every blind person has at least one white cane.

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