…. ‘Prejudice, social stigma, myths and misconceptions increase down syndrome marginalization’
Rutendo Chirume
For Tendeso and her family the journey of taking care of her brother named Tavonga who was born with a Down syndrome condition has not been a walk in the park for he would sometimes get paranoid and get out of control for no reason.
Narrating how they have managed to train him to take care of himself, Tendeso said it has not been easy but they have managed to train her brother how to take care of himself even when they are not around and it is important that care givers for people with Down syndrome condition should have patience more than anyone else.
“Tavonga is 23 years old now but still behaves like a small child and even enjoy playing with kids and does not have adult friends. It has been difficult to take care of him but now it is better because we have mastered how to handle him especially when he throws his tantrums. He does not want to feel annoyed and his memory is very sharp, he never forgets a thing especially his toys. Also being at Ratidzo Zimcare Trust has helped him a lot on acquiring life skills. He is able to bath himself, make his bed, relief himself. In fact he is able to do anything able bodied person can do except he is a little clumsy and slow in doing things.
“People with Down syndrome need care, love, attention and patience. As a family, we have accepted Tavonga’s condition and with the help we get from his school and some other treatments from his therapists have managed to improve his development. It is important that we understand their needs in particular hygiene, sanitization as well ensuring that they are as smart as possible. Caregivers should have a heart to continuously monitor them,” said Tendeso.
However, it can be a disadvantage to people who do not have money to enroll their kids at schools or institutions which cater for people with special needs.
Unlike Tavonga who had support and love from his family which understand that, his condition is not a curse or bad luck.
Mejury who comes from Masinire a marginalized village in Gutu district of Masvingo has been subjected to discrimination and stigmatization as the community accuses her family of using her on money rituals or sacrifice to an occult in order to acquire wealth, even her family pretends like she do not exist.
Mejury who is commonly known as Meju by the community would always be locked in doors and the only time you see her is when she goes to the toilet. Her family never talks about her everywhere and shut her away from people.
Due to lack of information, poverty and inaccessible health facilities, religious beliefs and conservativeness, people with Down syndrome are denied medication, often left out, excluded and shunned.
Statistics shown by Down Syndrome Society of Zimbabwe reveals that over 40 000 people live with Down syndrome in Zimbabwe and prevalence of disability in the country is estimated to be seven percent therefore basing on a total population of approximately 18 million, this amounts to over 125,000 individuals with disability.
Director of Zimbabwe Down Syndrome Association Sibonisiwe Mazula said there are a lot of challenges being faced by people with Down syndrome as well as their caregivers, parents and so much need to be done in order to improve their lives.
“For the parents you first need to accept that your baby has Down syndrome or any other form of disability. Parents go through denial stage for fear of future of the child and this may sometimes result in conflicts among families where the mother in most cases is blamed for the baby’s condition. Secondly, a current research on people with disabilities have revealed that people with Down syndrome are always discriminated, stigmatized and marginalized because in the education sector they are often denied access because of inaccessible resources and in rural areas there should be five or six children with Down syndrome to form a class which is not practical versus the rural set up meaning at the end of the day such children end up not acquiring education.
“In politics and employment sector of government and private co-operations, people with disability are very few not to mention with Down syndrome in particular because they are under estimated as well as their capabilities. Even the environment is not favorable, they are ignored by other children or even abused and that is why sometimes we end up having cases where parents lock up their children. There is a lot going on but where is government? Disability rights are human rights. They must be given opportunity to participate, contribute and be included in the community. They must be recognized with equal and quality opportunities,” said Mazula.
The International World Down Syndrome Day programme 2022 lobbied for inclusion under the theme ‘What does inclusion mean’.
The theme advocates for inclusion of people with Down syndrome in employment, health, politics and education because they do not benefit from full effective participation and inclusion in society thereby fullfilling, promoting, protecting and respecting the rights of people with disabilities. Many children with disabilities including Down syndrome are still reported to be out of school due to transport challenges, difficulties with boarding at schools, and the problems of transitioning from an inclusive primary to a secondary school that has not been part of inclusive education initiatives.
According to Ministry of Primary and Secondary Education Annual Statistics Report 2014 the prevalence of in-school children with disabilities was 34,734 but increased to 52,232 in 2016 representing percentage increase of around 50% whilst Zimbabwe’s National Disability Survey (ZNDS) reported that 52.4% of people with disabilities in Zimbabwe have never attended school, 16.5% have attended school for up to two years and 28.2% have not gone beyond Grade seven levels.
Disability Amalgamation Community Trust (DACT) spokesperson Henry Chivhanga said in order for people with disabilities to be fully included in all sectors the national disability policy which has been amended to cover a wide range of what should be done towards the people with disability should be promulgated.
“National disability policy covers a wide range of what should be done towards people with disability. Unfortunately the enabling act which is being amended has not been promulgated by parliament with necessary provisions to give effect to the national disability policy. The Act implementation should be taken as a priority and at any level of development persons with disability should be taken seriously,” said Chivhanga.
Down syndrome is a condition in which a person has an extra chromosome also referred to as small packages of genes in the body which determines how a baby functions and develop as it grows during pregnancy and after birth.
When a baby is born it contains 46 chromosomes but babies with that condition have an extra copy of one of these chromosomes called chromosome 21 which causes genetic disorder which leads to various physical and mental disabilities.
A local nurse who preferred anonymity said the condition is usually caused by mother’s age at conception, genetic mutations, life style and environmental factors.
“In the majority of Down syndrome cases, errors in cell division that lead to the extra chromosome 21 from the child’s mother. A baby receives 23 chromosomes from each parent making it 46 altogether but due to old the mother’s age at conception she is at risk of producing an extra chromosome which is in this case referred to as chromosome 21. But it is important to note that a woman’s real risk for having a child with Down syndrome remains low until age of 40 while the odds of a 35-year-old woman having a child with Down syndrome are one in 350, those odds rise to one in 100 at age 40. By the age of 45, the odds are 1 in 30.
“Also in some researches, gene mutations lead to Down syndrome condition. A shortage of folate which is a type of vitamin B has been shown to disrupt the way DNA and chromosomes separate and recombine. And if a parent has a gene mutation that messes with their body’s ability to metabolize folate, that may raise their risk for having a child with Down syndrome. Therefore that is why it is important to observe our lifestyles including our diets,” said the anonymous nurse.
There is no cure for Down syndrome but some treatments such as physical, speech and occupational therapy can aid early childhood development.
