Blind, but not in the dark: How we cope with blindness

Nice Macharia, a second year student pursuing a degree in special needs at Mount Kenya University, was always a bubbly child. And all was well until one day, as a Class Five pupil, she couldn’t keep up with writing properly along the rules of the exercise book. She also realised she could not read from as far as the blackboard was when seated at her desk. 

Then she sought medical attention and was advised that she was losing her sight gradually. And before long, she had lost her sense of sight. For good.

Yet, if you meet her in the lecture room, you may never know that she is visually impaired. The fact that she has a designated sitting position may be the give-away. But all else is normal. 

She chats and can receive phone calls without necessarily depending on another person.

She uses assistive technology that enables her to do almost everything that her classmates can do – for instance the use of social platforms like Facebook and WhatsApp. She does this with the help of software on her phone that reads whatever pops up on her screen in a pace and accent she can understand.

She has also mastered the placing of letters on her keyboard. This enables her to chat freely. 

A lot changed when she lost her sight, for instance the mode of reading and writing. It used to be through print and now it is braille, which she uses in writing and reading.

With the help of talk-back technology, she says, she can also access content from the internet with ease. 

The only challenge arises when it comes to marking her assessment tests “because it takes longer to have my results back”.

“If we had an Orbit Reader (braille display device) around, it would be easy to have me write my work in braille then get the same work in print format,” she says.

Orbit Reader is another type of assistive technology (AT). ATs are basically links between persons with disabilities (PWDs) and their independence, which includes access to digital content. The technology makes it possible for PWDs to lead independent lives.

Everything suddenly went dark

When one loses one of the five senses, the remaining senses “manifest strongly”, says Mr Julius Mbura, a visually impaired law graduate. 

If Julius were not visually impaired, he would have been a pilot. He was also artistic, and gifted in pencil drawing. He, however, lost his sight, not once, but twice, and it went with some of his dreams.

Growing up, he was always fascinated by heights and automotive machines. He also loved cars since he was a child. So much so that he only envisioned himself being a pilot or a driver or a mechanic.

He was only 10-years-old, he recalls, when everything “suddenly went dark”. Born and raised by a single mother, his memories of childhood are those of his mum struggling, sacrificing all that she had to have him see again.

“I knew mum tried all she could. She visited eye doctors, different pastors, just so I could regain my sight,” he says. “I was still young and didn’t know how to handle the overwhelming emotions that came with it. And it made me feel that I was no longer going to become whatever I wanted to be when I grew up.”

“Everything I wanted to become crushed,” he adds.

Later on, he says, they accepted what fate that had presented them; that all had changed. Then he enrolled in a special school that was predominantly for the visually impaired.

His interaction with his peers was now a different ball game. He had to adapt, learn and unlearn how to live in the “blind universe”. 

“At the school, I learnt how to use walking aids, white canes and being taught how to listen more and use my hands more to distinguish between things. That was the only way to feel and know things,” he said.

A lot was happening so fast. He yearned to one day wake up and see light “once more”. Then one day he woke up and realised that he could perceive light again, albeit faintly. But the doctors had warned that even with the “return”, he will lose the sight again. 

“I could perceive colour and yearned for the next sunrise. These are the days I learnt to live a day at a time and to be independent,” he says. 

He could see only a metre away. 

It is during this time, he recalls, he prepared for everything. He used the second chance to prepare mentally, knowing it would get worse. 

He learnt how to walk perfectly with the aid of a white cane.

It all went dark again

“Being visually impaired, people offer help, but it would need you to fit onto their schedules. And, when someone fails, it hurts and inconveniences a lot,” he says.

So, when it all went dark again, he had learnt to walk the streets without depending on other people. 

At the time, he had even studied law at the University of Nairobi, and had graduated. But just before he could sit for the bar exams at the Kenya School of Law, he lost sight completely.

On campus, he says, he connected deeply into the automotive industry because “I had the freedom of surfing the net and learning about automotive”.

He had prepared for the second loss of the sense of sight. He, however, did not know the time. It went with his dream of being a barrister. He now reviews cars by touch and feel, largely as a passion.

“At the second time, it was more of an adjustment than it was of feeling inadequate and emotionally disturbed,” he says. “I especially check out for the inclusions and specifications in the latest model. Then I touch and can tell whatever the model of car it is.”

Like Julius, Edwin Mulama, a second-year student at Naivasha Technical Institute, also lost his sight at 10. But his desire to be an instrumentalist was fuelled. 

He is now an instrumentalist and can play a drum set, the piano, the guitar, bass, and acoustic. And, he even has a YouTube Channel – Edwin Mulama.

In 2007 when his eyes became itchy and sight blurry, he thought spectacles would correct the issue. But the eye sight kept on depreciating until the spectacles were not of help anymore. Again and again, his sense of sight kept failing. He would only perceive “some” light but he wasn’t able to deal with print. 

Three years later, he had to learn braille language. Around 2015, light seemed to have dimmed further. He says that was when he became totally blind. In between, he perfected the art of playing musical instruments. 

“I was able to interact with NVDA, a screen reading software that enables the visually impaired to listen to learn as though they are living their normal lives. It is installed in computers,” he says, adding that studying music as an optional subject has helped him maximise his pastime.

He has mastered the piano keyboard and he plays it flawlessly.

According to Mr Peter Okeyo, the programmes manager at inABLE, an organisation that supports people living with disability, some of the most common assistive technology in Kenya and Africa include screen readers such as NVDA, which is an open source and free application, and JAWs, a software meant for commercial purposes and needs to be purchased. He also mentioned screen magnifiers, such as desktop zoom applications, for users with impaired vision. For the deaf, he said, the accessibility of the content is key but most use captions, and applications such as Finger-spelling for beginners.

“The inaccessibility of the content posted online limits people with disabilities, especially the blind and visually impaired from getting access to digital information,” he said. “If you develop a website that is not accessible, you are denying the people living with disability access to very useful information and limiting their independence.”

“It is important for developers to have the disabled in mind when designing web and mobile platforms and or applications because if it is accessible to PWDs, it is accessible to all people,” advised Mr Okeyo.

[email protected]