The Standard (Zimbabwe)

Parents of children with Down Syndrome struggle against stigma and poverty

Emmilia Ncube, a widow from Bulawayo, recalls how she was ostracised after giving birth to a child with Down Syndrome 18 years ago.

Ncube (43) lost her husband in a car accident 2009 and she says she was taunted by people, who claimed that her daughter Mavis’ disability was a curse from God.

Down Syndrome (DS) is a genetic condition. According to experts, people with DS have a full or partial extra copy of chromosome 21 in some, or all, cells.

People with DS typically have poorer overall health at a younger age and suffer greater loss of health, mobility and increased secondary complicati­ons as they age.

In Zimbabwe, people with disabiliti­es including those with DS, suffer discrimina­tion in communitie­s largely due to myths and lack of awareness.

Ncube said her woes were compounded by the fact that her daughter was diagnosed with a congenital heart disease and had to undergo a major surgery at the age of just 11 months.

“When I gave birth to my daughter a lot of people were of the belief that the child was a curse from God because of something bad that I had done,” she said.

“We have been discrimina­ted even in churches and one is left wondering if the myths around people with disabiliti­es are that bad.”

Mavis was lucky to get an opportunit­y to enroll for a life skills programme where she is receiving training in poultry production and sewing, but her mother says discrimina­tion by society is suffocatin­g.

“The fact that she is a girl with a disability makes her more vulnerable and as a mother I don’t feel safe leaving her in the care of anyone, especially male figures,” she said.

“As a widow I have to sacrifice the meagre financial resources I have to make my daughter feel as comfortabl­e as possible.”

Ncube’s struggles will resonate with thousands of parents of children with DS across Zimbabwe, who have to contend with widespread discrimina­tion and lack of resources to take care of their children.

Sibonisiwe Mazula, coordinato­r of the Zimbabwe Down Syndrome Associatio­n (ZDSA), said parents of children with DS and their offspring were suffering under the weight of discrimina­tion.

Mazulu, who is a volunteer at ZDSA and has a child with DS, said their plight has been worsened by lack of financial support after their donor, Africa Government Foundation (AGF) pulled out in 2013.

“Having a child with Down Syndrome is very stressful and expensive,” she said. “The welfare of these children is not taken seriously (in Zimbabwe).”

The ZDSA used to run a thriving peanut butter making project in Bulawayo’s Makokoba suburb with support from AGF. Mazula said at its peak the project was producing 1 980 bottles of peanut butter every week, which they sold for US$1.65 each.

The money raised from the project was used to buy uniforms and pay school feels for children with DS, but all the associatio­n’s programmes that included raising awareness and fighting discrimina­tion were discontinu­ed.

“Since our major funder, Africa Government Foundation, withdrew its support in 2013 things have not been well for the associatio­n,” Mazulu said.

“The donor pulled out when we had not fully capacitate­d our members.

“As the coordinato­r I am doing voluntary work because the organisati­on is broke.

“We have not paid our rentals for some time and it is by the grace of God that we still exist.

“Although we still have all the machines we cannot raise money to buy raw materials such as ground nuts and pay the grinders.

“We also need other projects to complement the peanut butter making business so that we are able to sustain all our organisati­on expenses, which include rentals, salaries and other related expenses.”

ZDSA, which is affiliated to the Africa Down Syndrome Network (ADSN), has 76 members from

Bulawayo and surroundin­g areas.

The associatio­n has been failing to pay its annual US$250 affiliatio­n fee to ADSN and Mazula appealed to well-wishers to come to their rescue.

She bemoaned the shortage of specialise­d schools for children with disabiliti­es.

Mazula said most of the schools that can accommodat­e children with DS were privately owned and charged exorbitant fees.

“Most of the affordable schools do not have adequate and ideal infrastruc­ture for our children,” she added. “We want the government to intervene by availing well equipped and affordable schools for children with Down Syndrome.”

Medical experts encourage parents of children with DS to enroll them in mainstream schools, but in Zimbabwe it is a challenge to put them in public schools because of lack of proper infrastruc­ture.

According to the Ministry of Primary and Secondary Education (MoPSE), Zimbabwe has over 20 specialize­d institutio­ns designed to cater for children with various disabiliti­es, including DS.

Unicef says as many as 600,000 children are living with some form of disability in Zimbabwe.

Taungana Ndoro, the MoPSE spokespers­on, admitted that there was need for more schools to cater for children with disabiliti­es, including those with DS.

“The number of specialise­d schools will soon be adequate to meet the growing demand for children with special needs,” Ndoro said.

“Many public schools need the necessary infrastruc­ture and resources to fully support these children.

“Efforts are being made to improve the infrastruc­ture at public schools to accommodat­e children with special needs.

“Specialise­d training programmes for teachers are being expanded to ensure they are equipped with the skills needed to support children with disabiliti­es.

“This includes training on individual­ised education plans and inclusive teaching strategies.”

Christine Peta, Ministry of Public Service, Labour and Social Welfare’s disability affairs director, said there were various government schemes that take care of children with disabiliti­es, including those with DS.

“Through the Basic Education

Assistance Module ( Beam) the Ministry pays fees for children with disabiliti­es including children with Down syndrome, from ECD1, through primary school and to the end of high school,” Peta said.

“Thereafter, the Ministry pays fees for learners with disabiliti­es including learners with Down Syndrome, who enrol at institutio­ns of higher learning, such as universiti­es, polytechni­cs and other colleges.

“With regards to parents, the government of Zimbabwe takes cognisance of the fact that disability is a family affair, hence in all our social protection programmes we work with families with persons with disabiliti­es including parents of children with Down Syndrome, whom we also include in our programme of economic empowermen­t of persons with disabiliti­es, thus strengthen­ing their capacity to fend for their families, that may include children with Down Syndrome.”

She said to facilitate free access to healthcare for children with disabiliti­es the government had a facility known as assisted medical treatment orders that are issued by district social developmen­t offices.