Nancy Maina

For deaf children to practice and master social and emotional skills, they need to have their parents and caregivers acquire a common language that they can share and learn together from the deaf child’s birth. Nancy has created a first-of-its-kind approach to addressing this problem in East and Central Africa with the endorsement of the largest children’s hospital in East and Central Africa.   

The formative years, spanning from ages 2 to 5, hold immense significance in a child's development, particularly in the realms of language acquisition and cognitive growth. However, the lack of early detection and intervention for hearing loss leaves many deaf children without the necessary support and resources to acquire language skills and effectively communicate with the world around them. Nancy is addressing the root cause of language deprivation at its earliest and most influential juncture. While various solutions tend to address language deprivation and its consequences later in a child's life, Nancy recognizes the unparalleled potential within the formative years. Her approach is addressing and making sure early screening and detection of hearing loss during this stage, paving the way for timely interventions and customized support systems.   

  

Nancy's approach is however not just about early detection and intervention. It is a holistic approach to early language development, which includes parents and guardians in the learning process. Unlike other solutions that only focus on the child or just have a medical approach, Nancy’s approach is committed to creating inclusive spaces that involve the entire family, enabling deaf children to flourish and thrive. Parents and caregivers usually have a huge role to play as the decision makers for the children and Nancy recognizes the importance of incorporating them into the solution but also providing a safe space and community where they can interact with other parents they can speak to and learn from. In doing so, she ensures that deaf children receive the necessary tools and resources needed to foster healthy language development, thus eliminating any chance for them to fall behind.    

In Kenya, the absence of early screening and detection for hearing loss among newborns is a concerning issue that remains largely unaddressed. When infants are born, there is a lack of assessment for potential hearing impairments, causing this problem to remain hidden in the shadows. Additionally, healthcare professionals, including nurses and doctors, are not adequately trained or equipped to recognize hearing loss in its earliest stages. The absence of routine hearing checks during infancy is a concerning gap in the medical system, reflecting a broader societal blind spot towards this critical aspect of child development.  

  

On the other hand, 90% of deaf children are born to parents with regular hearing, who do not anticipate or prepare for the possibility of their child being born with hearing loss. Hearing loss, an invisible disability, often becomes apparent to parents only later on. When parents realize their child's hearing impairment, they often find themselves in a state of denial and confusion. The lack of information and resources worsens this emotional response, as they grapple with the daunting task of understanding the best course of action. The prevailing societal stigma around hearing loss further compounds this issue, causing families to isolate themselves thus preventing them from seeking timely interventions. Rather than addressing the problem during the critical early years of a child's life, parents frequently wait until the child reaches school-going age (5 years) before pursuing interventions, such as teaching them sign language.  

  

However, this delay proves detrimental, as the most opportune time for language acquisition and brain development is between the ages of 0 to 5. Scientific evidence has proven that during the critical period of language acquisition (approximately the first five years of development), there is a high degree of brain plasticity. Language delays affect the development of neuro-linguistic structures in the brain, especially those related to developing grammar and second language acquisition and appear to decrease grey matter in certain parts of the brain. Altogether, a fundamental and irreversible biological impact on the brain and on healthy development appears to occur when an accessible language is not provided by a certain early time period in brain development. Sadly, this delay results in a reduced capacity for language acquisition, impeding the child's overall cognitive and emotional development.  

  

The far-reaching consequences of a lack of timely intervention in a deaf child's life resonate across every aspect of their development. Language, often referred to as the currency of life, serves as the conduit for communication, learning, and social interaction. When a deaf child misses out on the critical early window for language acquisition due to delayed interventions, their ability to effectively communicate, understand concepts, and engage with the world becomes severely hindered. This deficiency ripples through their education, social relationships, and even employment opportunities, perpetuating a cycle of exclusion and limited potential. According to data from the Kenya National Survey for Persons with Disabilities a mere 10% of deaf children in Kenya have access to education, proof of this consequence. The emotional toll is also profound, as the child may grapple with feelings of frustration, isolation, and low self-esteem.    

Nancy's work is holistic and encompasses a deep understanding of the various factors that hinder early intervention and overall well-being.  

 

She embarked on her journey by strategically positioning herself as an advisor at Gertrudes Children's Hospital, East and Central Africa's largest children's medical facility. As an influential thought leader in the pediatric healthcare domain, Gertrudes not only serves as a beacon of innovation but also acts as a referral hub for 20 public hospitals, amplifying its impact across a vast network. Moreover, Gertrudes' pioneering utilization of telemedicine establishes important connections to five remote and underserved regions, further extending its reach and influence.  

 

Her initial mission was to advocate for the implementation of early hearing screening tests at birth within the hospital's framework. However, through conversations with hospital personnel, doctors and administrators, she unearthed the intricate complexities that hindered the seamless integration of universal screening tests. Nancy's insights revealed that while the initial testing phase proved relatively straightforward, subsequent assessments demanded specialized technology and controlled environments. Furthermore, she unveiled instances where diagnostic tests were inadvertently overlooked in the fast-paced hospital environment. Nancy's identification of systemic gaps within Gertrudes sparked a wave of change that transcended the introduction of early screening. With her insights as a guide, the hospital was empowered to institute measures that directly addressed the challenges at hand. For instance, recognizing the need for controlled environments and specialized technology, Gertrudes introduced dedicated well-equipped rooms ensuring that children requiring further evaluation could undergo tests in optimal conditions, thereby increasing the accuracy of their diagnoses.  

  

This partnership's ripple effect is noticeable, as the transformative changes initiated within Gertrudes resonate across its extensive network of partners, propelling a wider transformation in pediatric healthcare practices and inspiring a collaborative commitment throughout the region. Her work is, however, not limited to Gertrudes and its networks of hospitals, she also plans to include midwives working in clinics in peri-urban and rural areas to make sure hearing loss does not go undetected and is screened at birth.  

  

Nancy's work extends beyond the medical system, including a profound understanding of another challenge within the landscape: the crucial role of parents and caregivers. Recognizing that timely interventions often fail due to issues like information overload, societal stigmas, and a lack of cohesive support, she's pioneering an empowering program tailored for parents of children with hearing loss. Central to Nancy's approach is cultivating a network where firsthand experience becomes a powerful tool for mutual support, elevating parents to the role of case managers providing peer-to-peer support amongst each other. This interconnected community not only shatters isolation but ensures practical wisdom is shared, and psychosocial concerns are addressed. Nancy's realization that empowered parents foster early interventions amplifies her impact, as equipping parents with knowledge, resources, and advocacy sparks a community-wide revolution that propels children with hearing loss toward brighter futures. A key feature of this network is the use of WhatsApp groups, where parents can share information and experiences in a safe and supportive environment. This has been particularly beneficial for parents who have felt overwhelmed by the amount of information available online or they receive from different sources. By sharing their own experiences, parents are able to provide each other with practical advice and emotional support.  

  

Moreover, she has developed a range of programs, including Home-Based Comprehensive Care, Hangout Hub, and Talent Academy. Home-Based Comprehensive Care targets families with children aged 0-2, providing case management and a roadmap for deafness intervention. This initiative creates a trusted space for families to access resources, fostering healthy language development through early interventions. Hangout Hub is a program for families with children aged 3-6, offering interactive experiences that promote language growth, emphasizing fun activities and peer interactions. This program helps children develop social skills, communication abilities, and self-esteem. Talent Academy focuses on nurturing talent and training Kenyan Sign Language (KSL) content creators, amplifying communication and inclusion. This program not only equips individuals with the tools to communicate effectively with the deaf but also promotes KSL as a language of inclusion, advancing the creation of a society where barriers are dismantled, and deaf individuals can participate fully and unencumbered. Nancy currently has been able to reach 5000 parents across 5 districts in Kenya through this support network. Currently she has 308 children enrolled in these programs.  

 

Nancy is steadfastly driving her vision of inclusive change to become the norm in society. Leveraging social media platforms, she employs YouTube as a powerful tool to showcase her work, highlighting the remarkable talents of deaf children, and sharing inspiring stories and interviews with parents. This strategy amplifies awareness, educating the masses about the challenges faced by the deaf community and the transformative solutions being championed. A million views on this channel are a true testament to the reach she has with this platform. As an architect of societal change, she has also instituted the "Lugha Ishara Inclusion Clubs" program. By providing staff training in organizational development, interpretation services, and Kenyan Sign Language (KSL) content development, this initiative is fostering a culture of inclusivity. The program not only equips individuals with the tools to communicate effectively with the deaf but also promotes KSL as a language of inclusion, advancing the creation of a society where barriers are dismantled, and deaf individuals can participate fully and unencumbered. Currently 438 staff members across 12 organizations have been part of the inclusion clubs.  

  

Guided by her insights, empowered parents, and undeniable evidence, Nancy stands poised to catalyze transformative policy changes. Armed with the success of her initiatives, she is pushing for the mandatory implementation of universal screening across hospitals by the Ministry of Health. Her approach emphasizes nurse training, necessary resources, and integration into the National Hospital Insurance Fund. Furthermore, Nancy is slowly building a local evidence base in a multilingual context. Most research in this area has been conducted in mono-lingual contexts in the United States or less linguistically diverse areas of Europe. By building a local evidence base that reflects the linguistic diversity of Kenya, Lugha Ishara can develop interventions that are tailored to the unique needs of the community and are more likely to be effective.   

Nancy's journey towards igniting social justice and breaking barriers began in her childhood. As a child, she faced frequent illnesses and was labeled as ‘fragile’, something she did not like being identified as. Her father, a great source of inspiration, instilled in her the belief that she possessed limitless potential, a sentiment he reinforced through his own acts of generosity such as paying school fees for others and supporting the homeless. Encouraged by his unwavering belief in her capabilities she started a vegetable garden in her teen years, which quickly turned into a successful business. This venture gave her a sense of independence and belonging, proving that she could create solutions instead of being seen as someone who needed help.   

  

After graduating with a bachelor's degree in social work from the University of Nairobi, Nancy worked as a business development officer in a start-up social enterprise. Here, she coached and mentored young women on graphic design for economic empowerment. Additionally, she started to mentor high school girls with her university peers. Nancy's commitment to promoting inclusion and economic empowerment took her to Indonesia, where she served as a business Advisor for Voluntary Service Overseas (VSO). Despite facing cultural limitations as a young, black woman, she successfully developed partnerships, sourced funding, and established advocacy and task forces. Nancy's impactful work led to a state visit by the President of Indonesia. It was during her time in Indonesia that she encountered deaf children. One of the community volunteers, trained through her enterprise development programs, ran a social enterprise that empowers people with disabilities. The language barrier, already a challenge for her, was compounded by the fact that she couldn’t communicate with the deaf children. This inspired her to start learning sign language. She felt very empathetic towards the children and spent a lot of time trying to understand the challenges they faced.   

  

Returning to Kenya, Nancy wanted to make a difference. She started at her workplace by establishing the Kenya Sign Language Club, with Deaf individuals serving as teachers. This initiative trained VSO staff as sign language learners, testing the effectiveness of using deaf facilitators. Her work was cited in the VSO Kenya annual country report for contributing to systemic change in attitudes, beliefs, and practices regarding social inclusion. Through her efforts, she encouraged broader conversations on disability inclusion within the organization.    

Nancy's curiosity drove her to investigate the landscape of organizations focused on deaf children. Through her research, she recognized a notable gap: most efforts and interventions were tailored towards older children with hearing disabilities. Intrigued by this disparity, she embarked on a quest to uncover the whereabouts of children aged between 0 and 5 within this context. Nancy's persistent curiosity fueled her desire to bridge this gap and understand the specific needs of this age group. To deepen her understanding and equip herself with the necessary expertise, she pursued a Masters in Child Development, specializing in Deaf Children Education at Daystar University. This educational pursuit marked a pivotal step in her journey towards starting Lugha Ishara.   

  

Nancy's leadership role at Lugha Ishara, an organization she founded, has made a significant impact on the developmental growth of Deaf children and the well-being of caregivers. She has witnessed heartwarming stories of growth among the children and their parents, reinforcing her belief that deaf children can break barriers and live independently, away from the label of needing constant help.