Deformed children need hope and a reason to live

Bare-footed, deformed from head to toe, unhealthy, shoddy but cleanly dressed, Carembo Kyakya waddles on her fours trying to traverse the tough terrain to get to her next point. It’s her only way of mobility. Sad as it might sound, she doesn’t pity herself but draws it from onlookers surprised by the rare spectacle that fate condemned their small sweet sister.

Carembo Kyakya (not her real name) has given it all to be a normal child, but nature would not allow it. She’s pinned to the ground and struggling to rise and walk on twos like most of us.

Carembo was born normal but an accident while being fed on porridge at the age of one condemned her to the inevitable. Clinically dead, she was pronounced when her mother rushed her to a hospital after she choked. She did not give up until a miraculous recovery following several hospital trials around Nairobi.

As though this was not enough punishment for the sweet soul, Carembo cannot talk or hear. A damning definition of a person living with nearly all forms of deformities. Tears from onlookers freely flow as we document this horrifying encounter just to create awareness and mainstream deformities and coping mechanisms.

Mainstream media mostly avoid these human-interest stories for ethical and legal reasons, hence locking out this reality from the rest of the population and possible interventions. However traumatically distressing this might be, it is an unavoidable reality. Carembo is lucky she is in a care home recognised by the Ministry of Education. Such a case needs 24-hour care, which her institution can hardly afford.

Confessions by parents and guardians of children with deformities draw intense emotions including perceptions of self-pity, blame games, broken families and remorse due to the burden that comes with caring for a deformed child. The psychological, health, education, spiritual and economic implications leave permanent scars to the victims and their families incapacitating them for generations.

When orphaned and deformed children get to the age of reason and find they are different from the rest, it is a painful fact that needs life-long love, support and acceptance by society. Hope and a reason to live is a choice that deformed children should be served as they continue getting material and financial provisions.

Often people living with deformities feel like a burden to themselves, families, communities and the government. There’s a need for a shift in practice to empower them for sustainable self-reliance and support for families of those with severe, extreme and advanced cases of deformations.

Special-needs learners come with a fair chunk of challenges than regular learners. They are left in limbo suffering in silence. For those that can express themselves, they try to bring it out in whichever way possible, while those completely incapacitated, swallow their pains and agony with no one to unravel the mystery that drowns their souls deep down in sorrow.

Where will my help come from? They ask. Many wonder in anticipation and desolation considering their deplorable conditions. Where is the love, they ponder under their dungeons of destitution.

Sponsors flock to support regular sports, some being locked out with their sponsorship offers and finances since they want to tap the opportunity for their publicity. These readily available resources can change the lives of special-needs learners by affording them a sporting tour once or twice a year, which comes as a holiday and team building from their usually perceived concentration camps that serve as natural involuntary prisons.

Lack of access to some of required equipment, difficulty in operating some types of equipment, unaffordability of some equipment, and lack of specialised human resources to support learning and training such as braille transcribers, sign language interpreters, scribes, learner support assistants, house parents, nurses, physiotherapists, occupational and speech therapists are notable challenges.

— The writer is a Communication Specialist in the Ministry of Education