By Tendai Makaripe
CHILDREN her age descend upon dilapidated homesteads in noisy excited chatter about yet another day at school. To them school is the only place that brings life out of them and moments spent there are always cherished.
She sits in a wheelchair under the shade, wistful as she endures the saddest part of her day. Her condition prohibits her from being part of the group that walks excitedly back home; she sits in the wheelchair with nothing but countless unanswered questions.
Sandra’s future looks bleak. She casts a glance at the children walking home from school, momentarily looks at herself then immediately throws her head in her hands, her eyes almost instantly flooded with tears.
Her widowed mother looks helplessly as she tries to understand the mental and physical anguish her fifteen year old daughter has to go through on a daily basis.
Sandra suffers from a rare medical condition called spina bifida which affects between one and three infants per thousand in the world. It belongs to a group of disorders known as neural tube defects (NTDs).
These all involve problems in the development and closure of the neural tube, a structure in the human fetus that begins forming very early in a pregnancy. The neural tube eventually becomes the spinal column. When the neural tube does not close properly, it can lead to spina bifida, a disruption in the spinal column. Spina bifida occurs in varying degrees of severity, and in various forms.
This condition causes one to have neurological deficits below the level of the lesion making him/ her suffer from bladder and bowel incontinence (fecal incontinence) which is the unintentional loss of stool (faeces) or gas (flatus). It is often due to a failure of one or more of the components that allow the body to control the evacuation of faeces, when it is socially appropriate.
Due to Sandra’s condition, she has never been to school. The furthest she went was pre-school because she continuously soils her pampers and needs constant monitoring since she cannot do much on her own.
Unable to walk and confined to a wheelchair, her life is that of misery and punctuated by countless unanswered questions.
As if the mental pain was not enough Sandra has developed sores, blisters, and burns on her feet, ankles, and hips as a result of her condition. However, she does not know when these developed because at times she is unable to feel certain parts of her body.
At fifteen, it is an embarrassing condition but Sandra has had to live with the neglect that comes along with it. She does not have many friends, the community looks down upon her with some suggesting that her condition is a curse for something her family did, allegations the mother vehemently denies.
Based in rural Mrewa, Mashonaland East, she is part of a poor family that is struggling to make ends meet in a country that is not only facing hunger in the face but has an economy that is tottering on the brink of collapse. Close relatives are not doing much to help the situation.
“Food is a major problem for me. I sell a lot of things to help my children but because of the poverty in this area things are not always rosy. At times I get assistance from well-wishers in the community. Sandra needs clothes as well. Unfortunately relatives have not been forthcoming mainly because of the poverty,” said Sekai Socha Sandra’s mother.
Determined to ensure that her daughter does something for a living, Sekai sent Sandra to Ruvarashe Trust at Makumbe mission in Domboshava to take up sewing courses but the US$120 required per term is an uphill task for her. She had been selling mangoes and chickens in December to raise the fees but proceeds from that venture were highly insignificant.
“I want to pursue my studies so that I become someone in future. I try hard to cope with the others because I have never been to school and find it difficult to understand some of the things but I am giving it my all because I can see how much my mother is trying to make a life for me and my sister. Things may not be well right now but I am sure one day our prayers will be heard,” said the soft spoken Sandra battling tears.
Her case is not isolated. Children living with disabilities in rural Zimbabwe have reached unprecedented levels but unfortunately, they are suffering in silence.
World Health Organisation (WHO) defines disability as an umbrella term, covering impairments, activity limitations and participation restrictions. Therefore, disability is a complex phenomenon, reflecting an interaction between features of a person body and features of the society in which he/he she lives. A disability may occur during a person’s lifetime or may be present from birth.
Because of more than a decade of socioeconomic challenges, many children living with disabilities in Zimbabwe are among the most marginalized and excluded groups of children. Compared to their peers, they are less likely to access health, education and other social services. They are often excluded from opportunities to participate fully in their communities, and are more vulnerable to violence and abuse.
“Children living with disabilities confront many challenges derived from both internal and external factors. The emphasis on the perfect and attractive physique has caused children with disabilities to be the objects of unkind jokes and has led to them being either ignored or treated as inferior. It is asserted that if they are designated as inferior or second-class citizens, they are likely to have negative self-concept and to view themselves as inferior.
“These children often live as outsiders in their own villages and neighbourhoods. This is because those living with disabilities in most societies are given so little chance to take part in the life of the community because of the general belief that they are unable and should be treated accordingly. This situation makes it extremely difficult and sometimes impossible for them to access their fundamental social, political and economic rights,” said an official from the Ministry of Health and Child Care who refused to be named.
Because of ravaging poverty in rural areas, these children cannot afford to go to schools where their needs can be met. Most public schools in the country do not have provisions for children living with disabilities and there have been calls for schools which cater for the needs of these children to be increased. However some have reservations.
The plight of these children though not usually talked about is dire.
According to a 2014 survey called Living Conditions Among Persons with Disability launched by the Government of Zimbabwe through the Ministries of Health and Child Care; Primary and Secondary Education and that of Public Service, Labour and Social Welfare and UNICEF, fewer individuals with disability have ever attended formal education and people with disabilities are more exposed to physical and sexual abuse if compared to their counterparts living without disabilities.
The report came up with some disturbing findings which should spring the government and relevant stakeholders into action. It found out that 19 percent of children with disabilities did not proceed beyond Grade 7 compared to 14.6 percent in the control group and the percentage increases for those proceeding to Form 4. Furthermore, when children with disabilities attend school, their level of schooling is below that of their peers – literacy rates among people with disability is 77 percent while that of the control group is at 93 percent. It also concluded that children with disabilities are much more likely to have had a serious illness that can lead to death in the last 12 months, including high blood pressure, malaria and HIV and AIDS.
This is even worse when it comes to children in marginalised areas who due to their location were not part of these statistics. It is saddening that little is being done to address issues affecting such children.
With WHO statistics indicating an approximated 10 percent of the population having a known disability, Zimbabwe is running behind all known benchmarks in formulating laws and policies that make the lives of people living with a disability better. Zimbabwe falls short in many areas on a tick box against the expectations of the UN Convention on the Right of People Living with Disability.
Nyaradzai Perpetua Matiza, a child expert who has worked in various organisations that deal with children believes that: “The situation is aggravated by lack of a national policy frame work to recognize and respect the rights of children living with disabilities further urging the government to harmonize the United Nations Conventions of Person Living with Disabilities with the new constitution and other laws of the country to improve the lives of children with disabilities.”
Zimbabwe ratified the UN convention of the rights of the disabled in September 2013 but is yet to align this with the country’s laws.
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