When one member of family is mentally challenged

One morning, Agnes Mutemi took her three-year-old to an early childhood Centre. Like most parents, she expected the child to learn to read and write and pick a career later in life.

Earlier in 2003, shortly after Mutemi had given birth, the baby was taken ill. So severe was the sickness that she began having problems using her limbs. The baby’s mental development was also affected.

However, a determined Mutemi refused to believe that the condition would affect the child permanently. At school, weeks turned into months and months into years but Mutemi’s child Nambia could not progress beyond nursery.

Nambia’s younger siblings joined school and progressed to other classes. She had neither learnt to read nor write despite being in school for all those years.

Even with the determination to make her child succeed, Mutemi got alarmed.

“It took several years to accept that my child had a special condition. Nambia’s birth was normal but she was struck by a nerve weakening disease when she was just six months old. We were hoping the physiotherapy sessions would improve her condition” Mutemi said.

Mutemi said her daughter began taking her first steps at 24 months. After realising that she needed more attention, Mutemi enrolled her in a special needs boarding school in Thika.

“My daughter was there for a few months but I became worried with her being away from home,” she said, adding that she enrolled Nambia at Machakos Unit for the mentally challenged. The school is just 100 metres from the family home in Katoloni, Machakos town.

Nambia, 14, joins school mates every morning to learn basic mathematics, English, science and co-curricular activities such as ball games, bead work, making liquid soap and gardening. The school breaks at noon.

“Nambia is very jovial and loves school. She can colour, clean the table, sweep and even operate TV and phones,” Mutemi said.

And unlike many Kenyans who lock their disabled children in the house for fear of stigma, Mutemi and her husband say they are proud of their daughter and would do whatever it takes to support her.

Like Mutemi, Fatuma Juma gave birth to a child with down syndrome. The 55-year-old says her world was crushed when she realised the child had the condition. Family members, neighbours and the community shunned her. Some became openly hostile.

“Some close family members even told me to get rid of the baby but my mother would hear none of that. When I took my son to hospital for check-up, the doctor said down syndrome is not sickness,” the mother of four said.
Fatuma says she delivered the child at home and developed complications. She had earlier been told that she could only deliver the baby through caesarean section but she could not afford it.

“I went into labour as I was preparing for the Friday prayers. Luckily, there was someone who could assist me. I had prepared for the birth by buying gloves, cotton, and other necessary items,” Fatuma said.

The baby was unusually small and weighed only 1.5 kilogrammes. Fatuma was so worried that she did not breastfeed him. The baby’s growth was also slow. It took him five years to learn to sit by himself, Fatuma says.

The widow says bringing up a child with down syndrome comes with challenges other than a huge economic burden. The child needs to be taken for physiotherapy almost every day.

“There were four sessions per week and I paid Sh100 for each. Again, it is difficult to find a job since one needs to be home to take care of the child most of the time,” Fatuma said.

With time, Fatuma accepted the situation and even enrolled her son at Kaptisi School for the Mentally Challenged on the Nandi, Vihiga and Kakamega counties boundary.

The widow is involved in campaigns to raise awareness on down syndrome. She also encourages Kenyans with down syndrome children to take them to school.

“I believe these children have talents. They may not perform well academically but it is upon the parents, teachers and the society to identify their hidden talents,” Fatuma said, adding that many people with such disorders have excelled in sports and other fields.

Caring for mentally disabled children is involving. One needs to be extra careful as the young ones might end up harming themselves or others. Mutemi says only her and Nambia’s father can take the girl for a walk.

“We have to be extra cautious because Nambia is mentally disabled and a girl. We have heard many cases of such children being sexually taken advantage of,” she said.

Even the teachers who deal with such children need extra training and passion. Sometimes the teacher has to change the pupils’ diapers or sanitary towel.

“A girl having her monthly period might not know what is happening. We have to monitor the children closely,” Ms Margaret Mbithi, the teacher in charge of the Machakos Unit for the Mentally Challenged, said.

National Council for Persons with Disabilities Executive Director Mohammed Gabbow says disabled children the elderly are targeted by rapists because they, on most occasions, cannot defend themselves.

Studies have shown that higher rates of disabilities are found among children in rural areas.

Disabilities in rural Kenya account for 60 per cent of the country’s average, according to the National Special Needs Education Survey conducted by the Ministry of Education in collaboration with Voluntary Services Overseas (VSO) Jitolee.

The 2016 survey attributed the outcome to greater access to maternal and child health and rehabilitation services in towns. The study also indicated that more than 16 per cent of disabled children are out school.

The British Department For International Development (DFID), the Kenyan Government and the International Disability Alliance hosted the first global disability summit in London.

Organisers of the conference say it was aimed at bringing together leaders and technology companies to look into the barriers that prevent the disabled from pursuing and achieving their dreams.

While a majority of schools for the mentally challenged do not insist on age limit, many parents are often worried about what would happen to their children when they grow older.

While at school, the children are assessed regularly. Those whose performance improves are taken to regular schools. Teachers say the children are slow academically in the initial stages but usually catch up with others.

“Residents bring their children with a lot of expectations. There is a perception out there that mentally challenged children are mad. That is not the case. We have trained many and sent to them to mainstream schools. It should be noted that not every mentally challenged child can learn to read and write,” Mrs Mbithi said, adding that the unit admits learners of any age, including some who are in their 30s.

She added that the pupils need vocational training “since this will make them generate income and support themselves”.

Kaptisi Special School for the Mentally Challenged deputy headteacher Nicholas Malongo says learners between 12 and 30 require special attention as they have different needs.

“Because many of these children cannot excel in academics, many parents do not feel the need to invest in them. They think the children will not get employed after completing school. Academics alone should not be used to seal a child’s future. There are those who can express themselves and those who cannot. This means every child requires specialised attention," he said.

To address this problem, teachers at the school compliment classwork with home-based programmes every Friday. They also follow up on the learners’ progress and inform parents any policy from the Ministry of Education that touches them.

“We also use that day to give donations from well-wishers to parents. Some of the physiotherapy sessions are on that day too,” Mr Malongo said. Machakos VSO project officer Majina Mwasezi says the organisation is working with such schools to train learners on vocational skills.

“We urge parents of those who have received training in soap making and other skills to give them tools or a small portion of their land to work with,” Mwasezi said.

The National Council for Persons with Disabilities says it has come up with a number of programmes aimed at improving the lives of its members.

It says the disabled should be given skills that enable them to be economically independent. Uasin Gishu Deputy Governor Daniel Chemno says the county government recently hired 34 disabled people in many of its departments.

“We want the region to gain from their skills. It is now mandatory to employ youth and people in vulnerable groups,” the deputy county boss said. “We have noticed that such individuals have valuable skills but they are often neglected.”

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Countries and organisations make commitments at forum

The Global Disability Summit was held at Queen Elizabeth Olympic Park in London, the UK on July 24. It was hosted by the British Government, the International Disability Alliance and the Government of Kenya.

The summit celebrated the achievements and rights of the disabled and highlighted the role that innovation and technology can play to improve these people’s lives.

Kenya has ratified significant instruments, including the Convention on the Rights of Persons with Disabilities.

This convention sets out steps the government should take to ensure that the disabled enjoy the same rights as everybody else.

A report, Bridging the Gap – Examining Disability and Development in four African Countries, released early this year showed that a disability and development gulf exists even in countries where comprehensive policies are in place to support inclusion and equity.

Further, the research indicated that disabled adults and children are at risk of being left behind in education, employment, healthcare and social protection compared to the rest of the society.

The Global Disability Summit yielded ambitious commitments from a host of governments and other organisations to tackle discrimination and stigma.

About 301 organisations and governments signed the Charter for Change – an action plan to implement the UN International Convention on Disability.

Among the most significant pledges made were commitments to pass transformative laws to protect the rights of the disabled as well as assurances to help those affected by humanitarian crises.

There were also commitments to help the disabled access important technology and work with the private sector around the world to reduce their prices.

Globally, one of every seven people live with some form of disability, the majority in low- and middle-income countries.

In these settings, disability is a cause and consequence of poverty as the disabled often face significant barriers that prevent them from participating fully in society, including accessing health services and attaining education and employment.

Nine organisations and governments, including United States Agency for International Development, the World Health Organisation and Unicef, have, along with the United Kingdom, joined the Global Partnership on assistive technology.

The programme aims at transforming access to, and the affordability of, life-changing devices and basic technology, like wheelchairs and glasses. Unicef committed to help an additional 30 million disabled children gain a high quality education by 2030 through programmes in more than 140 countries.

Eighteen governments have committed to improve the way disabled children learn and invest in teacher training. Nine African governments also committed to creating safety nets to ensure that the disabled are not forgotten about in their societies.

In Kenya, efforts are being made to enrol disabled children in special schools before they are admitted in mainstream schools. Education officials say letting the children learn in mainstream schools helps integration and does away with stigma and discrimination.

Most special schools do not set age limit for their learners. It is therefore not strange to find young children and learners in their 20s or 30s in the same class or school. The schools usually compliment classwork with training and home based programmes. Teachers in special schools need more training to handle the children. Many universities and colleges offering education have such courses.