Raising children with disabilities

Mama Eloise Mutie, a casual worker at Isiolo Level 5 Hospital, is the mother of three differently abled children — two girls and one boy, aged between 9 and 19.

She lost her second born daughter, also differently abled, to a fire incident. She says she lives with perpetual guilt of leaving her unattended on that fateful day because she had to go out to look for food.

Bringing up her three children has been a challenging journey, complicated further by an absent father. Her husband left and moved on, blaming her for the condition of the children. The community too, has been hostile and she has changed her home because of this.

“I have wondered why fate would have me on such a sinking ship with the children and I being labelled bewitched,” she says, adding that the family makes ends meet through donations and well-wishers.

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The only regrets she has are that the person who raped her granddaughter has not been apprehended, and Ntinyari’s mother abdicated her responsibility.

In the outskirts of Kakamega, deep in a rural setting, Evaline Ingasa is raising her 16-year-old son, Bruno, who is abled differently. Her parenting journey has been a tough one. Mama Bruno faces each day with a new hope, believing that her son was not bewitched, or given up as a sacrifice.

“I feel helpless as I watch his innocence, while his body is wasting away with bedsores and under continuous attack leading to poor health,” she laments.

She says Bruno has outgrown his wheelchair, and getting another one is not her priority at the moment because she has to balance between buying medication for her son, providing food, paying rent, and buying diapers for him. Evaline’s family never wants anything to do with her. Her mother, brothers, a sister, and an ex-husband never check on them.

Often, Evaline has to lock up her son and go for long hours to fend for a living. In her absence, Elvis stays hungry and in the same position, until her mother returns because there is no one to help. These examples paint a gloomy picture of what challenges parents of PWDs face, more so in rural settings, where myths rule. Lack of awareness and sensitatisation has left these parents - sometimes grandparents hopeless, and at the mercy of well-wishers.

“Raising a differently-abled child in the rural area comes with unique challenges. However, with the right support and strategies, a parent to a special need child can create a nurturing and empowering environment for their child,” says Catherine Mugendi, a counselling psychologist and family coach.

Mugendi says among the challenges facing parents raising differently abled children in a rural setup include: access to education, healthcare, social stigma, financial support, and lack of awareness and support networks.

The family coach says due to the extreme poverty and lack of awareness, parents of such children greatly depend on a support system of both governmental and non-governmental professionals, many of whom are not headquartered in rural areas.

These challenges, she says, highlight the need for improved healthcare, education, and social support systems for families raising differently-abled children in rural Kenya.

“Parents like Evaline, Nchekei, and Eloise need to go through masterclasses that will introduce them to things like what to do if they suspect their child has a disability, how to take care of them, how to cope, and the available support systems, all of which can be provided at the nearest health facility,” says Mugendi.