Meningitis took her voice–she fought back with the written word

A childhood battle with meningitis impaired her speech, leaving her vulnerable to discrimination. Now Maryanne Emomeri is redefining how Kenya sees and hears people with disabilities.

One in five survivors of bacterial meningitis may experience a variety of long-term after-effects such as scars and limb amputations following sepsis as well as difficulties with vision, speech, language, memory and communication. 

While bacterial meningitis is a global public-health concern, it is most prevalent in parts of sub-Saharan Africa—from Senegal to Ethiopia—typically referred to as the “Meningitis Belt.”

In Kenya, Maryanne Emomeri is part of this reality. After a childhood battle with meningitis left her with a speech disorder, Emomeri is championing a more inclusive society through storytelling, advocacy and tech innovation.

The trauma of losing her voice remains fresh in her memory. Once, she remembered receiving a call from a reputable publishing house regarding a short story she’d submitted. Unable to give a clear response to a question the caller posed, she hung up and sent a text message instead, explaining her speech disability.

The caller’s response was a flat “okay,” which punctured the joy she had initially felt.

“That was it. No follow-up, no second chance, nothing,” she says. “I kept checking, hoping… until the festival began without me.”

That discrimination was hardly an isolated experience. Navigating Kenya’s public transportation systems, Emomeri confronted intolerant attitudes from daily commuters. 

One particularly haunting case occurred during a bus trip. She had been seated in the middle row alongside another lady. However, the lady, once noticing Emomeri’s condition, gave her an unpleasant look and moved to another seat. 

A recent study on accessibility difficulties in Western Kenya shows that the design of circulation paths and the layout of amenities in bus termini often hinder the mobility and independence of learners with physical disabilities. 

Compounding the woes is a general lack of awareness, which makes public transportation a daunting experience for Emomeri and others with a speech disorder.

The obstacles posed by prevalent bias and a lack of inclusive infrastructure not only hamper physical access but also affect the dignity of individuals with disabilities.

Emomeri’s advocacy draws attention to these systemic issues, pressing for legislative reform and cultural change. Her efforts emphasise the importance of fostering inclusive environments and ensuring that public spaces such as bus terminals are accessible to everyone.

Shortly after she turned two, Emomeri suffered a potentially fatal illness that left her with a speech disorder. Days prior, her mum had taken her for vaccination against meningitis. “But they told her I was still too young to receive it,” she recalls.

In the weeks that followed, she took ill, which doctors cursorily interpreted to be a case of malaria. 

In truth, she was battling with meningitis, a severe infection that causes inflammation of the brain and spinal cord. Left untreated, it can result in permanent brain damage or even death.

By the time the accurate diagnosis was made, the infection had already impaired the part of her brain that controls speech. “I almost lost my life,” she says quietly. “But God was still on my case.” 

Even for patients diagnosed early, meningitis can be fatal within 24 to 48 hours after the onset of symptoms. More often than not, survivors face brain damage, hearing loss or disability.

In the wake of her illness, Emomeri lost the ability to speak effortlessly. Her parents remained a source of strength, confident in their daughter’s potential. While her father remained supportive, her mother was persistent in seeking ways to ease the difficulties of her speech-impaired daughter. 

“They never made me feel like I was missing anything,” she says of her siblings. “At home, I was just myself and that was enough.”

Raised in a home filled with books, she learnt early on to think deeply, make up for her deficiency through the written word, and navigate the world with self-awareness and resolve. “Books became my best friends. I read everything, even what was beyond my age. That’s where I first discovered storytelling.”

Outside her home, the world was less forgiving. School was especially brutal. Thanks to her siblings, discrimination from peers at home was subtle.  But at school, “I was alone. That’s where I had to learn to defend myself,” she says.

This experience of constant exclusion became the bedrock of her advocacy, even though she didn’t recognise it at first. “I never set out to become an advocate. I thought advocates had certificates and offices,” she explains. “But as someone with a speech disability, I had to start speaking up for myself. That slowly extended to others.”

Later in adulthood, Emomeri confronted a new round of challenges—this time from the job market. “I’d get invited for interviews, only to be told they needed someone who could ‘communicate’—as if I couldn’t,” she remembers. “Some didn’t even bother to interview me once they saw me.”

Consequently, she turned to writing and, later, self-publishing. Her debut book, Punching Bag, which follows the harrowing reality of a disabled student in a mainstream school, was written at a time when no school admitted her for secondary education. One reader described the book as a “masterpiece.”

“That book gave me hope,” she says. “I realised then that I may not speak fluently, but I still had the power to communicate and influence.”

She wouldn’t stop at writing. In time, she took a foray into tech innovation with a safety device called Skio to alert people with hearing difficulties of nearby danger. 

She traces the inspiration for the idea to a fire incident in her college dormitory. Her roommate, who was hard of hearing, was oblivious to the fire alarm. The incident haunted Ememori. “What if I hadn’t been there?” she wondered. “What if she had died?” 

In the years since then, she has continued to expand her footprint in tech innovation. Together with two co-founders, she secured funding for a product that will address pressing concerns of hearing-impaired people. “We’ve tested it with potential users and established the need for it,” she says. Though still under wraps, the innovation is currently being refined.

These days, Emomeri serves as a platform manager at EnableMe Kenya, a digital platform for young disabled individuals to cultivate skills and build self-confidence. 

She remains critical of how individuals with speech disabilities are portrayed in the media.

“Comedians, radio hosts make fun of people with certain speech disabilities. Rarely do people with speech disabilities get invited to speak on TV or radio interviews,” she bemoans. “If they do, it’s only on a day like International Sign Language Day, where they are only invited to speak on that topic. ”

Despite Kenya’s recent legislation for inclusion, enforcement remains lax.

“We are still waiting for the president to assent to them into law This is what makes us advocates, we have to constantly have to push for these laws to be implemented,” says Emomeri, who is now the communication officer at the United Disabled Persons of Kenya (UDPK).

She credits her parents and a particularly encouraging teacher as her earliest mentors. “And Maya Angelou,” she adds. “Her ability to rise from pain and speak truth always inspired me.”

As she continues to inspire the younger generation with values of self-confidence, storytelling, and advocacy, Maryanne Emomeri’s impact resonates far beyond her story. “When people see me now, they see an expert. I get messages from people who say they’ve learnt from me,” she says. “That’s the real impact.”