Persons with Down’s Syndrome deserve a chance

Robin Muchetu, Senior Reporter

YOUNG people with Down’s syndrome deserve a chance to contribute to their local economies as seen by their ability to take part in activities that bring income to their various spaces.

While they try to make a living through various income-generating projects they come across, there has been seclusion of this group of people.

They feel they are not getting enough recognition and opportunities to train in mainstream income-generating projects.

Bulawayo is home to the Zimbabwe Down’s Syndrome Association (ZDSA), an association that was formed after realising the needs of children with the condition and how assistance can be rendered to parents who have such children.

According to the Centre for Disease Control and Prevention, Down’s Syndrome is a condition in which a person has an extra chromosome, these chromosomes determine how a baby’s body forms and functions as it grows during pregnancy. Some common physical features of persons with Down’s Syndrome include a flattened face, a short neck, small ears, a tongue that tends to stick out of the mouth, small hands and feet, poor muscle tone and loose joints, among other things.

Down’s Syndrome is a life-long condition that needs attention in the first years in order to assist children to improve their intellectual abilities and to also help them reach their full potential.

Ms Sibonisiwe Mazula, the co-ordinator of the ZDSA in Bulawayo has for decades advocated for the rights of children and youths with the condition and has raised concerns over the failure of this group of people to be fully recognised in economic activities.

Stigma and discrimination have affected them such that empowerment programmes that are set for able-bodied and even youths with other forms of disability are not extended to them.

“There are so many programmes that are available for our youths who have Down’s Syndrome but they are side-lined from mainstream projects. They’re rarely invited to these so it’s up to us to invite our youths from local schools and youth organisations for programmes so that they come and see what our children can do. It’s because they underestimate them when they look at them.

 “We have a young man here who was trained last year and he has started his own business and makes his own dishwasher, bubble bath and disinfectant (pine jelly). He is able,” she said.

Ms Mazula said the visibility of the disability must not be used against the child’s abilities if they have not been given the opportunity to try to use their skills.

“If we get an organisation that would want to train our children in these skills like making detergents, they can do it at home being assisted by their parents. We want them to also be aware of their sexual reproductive health needs and rights because youth with Down’s Syndrome are known to be asexual and never think of this but they need this education,” she added.

ZDSA had an opportunity to receive a peanut butter making machine 11 years ago to assist in creating income for children and their parents but this has been lying idle for years following the exit of the donor.

“The machine was donated by the Africa Development Foundation in 2011. We were with the organisation until 2013 but they later left the country. We used the machines time and again when we had peanuts. Initially we were using one tonne of peanuts per week. We used to supply Greens Supermarket and other shops and people were coming to buy from us here,” she said.

Ms Mazula said the donation of the peanut butter machines changed the lives of parents and children with Down’s Syndrome then.

The proceeds from the project were used to assist the children to pay for their medical and school needs.

“We didn’t go that far because it was a short-lived project. Parents of children with Down’s Syndrome were the ones spearheading the project by making the peanut better. They were being paid by the donor at that time. They had a salary but now we’re unable to do that. If we get peanuts, we’ll restart the business. There are four parents who are raring to go who want to come on board if we get peanuts.”

Ms Mazula said she would love to see the project take off in a sustainable manner by buying peanuts in bulk when they are in season and affordable.

Initially, she said, the funder bought a small machine for the organisation.

“The first machine saw us grinding the mixture twice to get a smooth texture that we would package. When we made a profit during production, we then used that to buy a bigger machine, a double cylinder which ground the peanuts and produced a smooth product at one go and it does a good job.

“We also received a roasting machine from the funder, it was roasting one-and-a-half buckets of peanuts at a time but as our customers increased, we realised it was slow and small. So, after making profits again, we bought ourselves a bigger machine which can carry two-and-a-half buckets and it helped us out a lot,” she said.

As part of the consignment of their machines, Ms Mazula said, they also have a sheller that removes the peanuts’ skins after roasting, which is more efficient for them compared to removing the skins manually.

Asked on the sourcing of peanuts for the project, Mrs Mazula said they used to get them from Gokwe which gave them the best quality peanut butter.

“When we started, we used to travel to Gokwe and we realised later that it was too expensive as we had to hire a truck to transport the peanuts. We also needed to provide accommodation for those that would go and make the purchase. We then struck a deal with the people in Gokwe who were bringing peanuts to Shashe Market in Bulawayo. So, every time we wanted supplies they would send them to us. We collected the peanuts from Shashe and it was working,” she said.

Ms Mazula stressed the need for the training of youths with Down’s Syndrome in skills that can sustain their livelihoods.

“These are things that we would like to partner with other organisations to come and sensitise the youth so that they know what’s happening around these areas. Health service providers go around sensitising other groups of youths but rarely do you find an event for these special needs groups. It seems like they don’t exist. We want inclusion of our children in all programmes from grassroots,” she emphasised.

Ms Mazula lamented the failure of children with Down’s Syndrome to enrol into some public schools.

“I have spoken to the Ministry of Education officials to ask why our children are not in schools nearest to them and there has been no solid answer. I was told at one school that as long as the class did not have at least five learners with Down’s Syndrome then they could not enrol them into a special class. I said to them that was not fair as that child must be included to learn with learners that are abled differently.”

She said children with disabilities must learn at the nearest Government school to them where they have friends and familiar people that they recognise instead of them having to go and learn far from their homes and parents.

This has led to many children failing to attend school as parents complain that they are being forced to send their children to special needs schools that may be far from home and are costly.

“I visited a school here in Bulawayo and they didn’t know who I was. I saw a little girl seated outside and I enquired why the child was outside and the teacher told me that the parents had not brought any toys for them so they were not going to do anything for her. Then I questioned the teacher as the child was paying school fees and if the teacher was not teaching her then that was a disservice to the child. How does a child in primary school socialise with a doll and toys all day when there are humans in the school? And this was the teacher for a special class for that school,” lamented Ms Mazula.

According to the new National Disability Policy, children with disabilities must attend school for free and their fees covered by the Basic Education Assistance Module (BEAM).

The ZDSA was founded by affected parents in 1984. Initially based in Harare, the organisation later established a centre in Bulawayo which is now being recognised as the head office. – @NyembeziMu