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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability. 

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential. 

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context. 

 

Empowering programme 

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.  

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says. 

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains. 

 

Feedback from parents 

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do …  she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.   

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before …  as a mother of a Down syndrome baby – but for any mother …  I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot …  my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …” 

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.  

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq. 

News Archive

You touch a woman, you strike a rock
2004-11-02

Prof. Engela Pretorius van die Departement Sosiologie in die Fakulteit Geesteswetenskappe by die Universiteit van die Vrystaat het die kwessie omtrent feminisme aangespreek tydens haar intreerede met die onderwerp, You touch a woman, you strike a rock: Feminism(s) and emancipation in South Africa .

Prof. Pretorius het gesê: “Die geskiedenis van feminisme oor die algemeen kan in drie fases verdeel word, waarna verwys word as golwe. Eerste-golf-feminisme (19de eeu) het die fokus geplaas op die beskerming van vroueregte in die openbare terrein, spesifiek die reg om te stem, die reg tot onderrig en die reg om middelklas beroepe en professies te betreë.

Vroeë tweede-golf-feminisme word onthou vir hoe dit moederskap geteoretiseer het as synde ‘n onderdrukkende instelling. Slagspreuke van die 1970s was die persoonlike is polities en susterskap is magtig. Prof. Pretorius sê beide slagspreuke bevestig die idee dat vroue universeel onderdruk en uitgebuit word en slegs deur erkenning van dié situasie kan vroue die strukture wat hul onderdruk verander.

‘n Belangrike aspek van die derde golf van die feminisme-teorie is post-moderne feminisme wat diversiteit en verskille onderstreep. Die poging van hierdie feministe is afgestem op alle vorme van onderdrukking. Vroue van kleur het ook hul ontevredenheid uitgespreek gedurende die derde-golf-feminisme. Die feminisme van vroue van kleur word gekenmerk deur verskeie kwessies en talryke intellektuele standpuntinnames wat neerslaga vind in verskillende terme, soos Afrika feminisme of ‘womanism, sê prof. Pretorius.

Afrika-feminisme dui protes aan teen die wit/westerse geskiedenis en die wit/westerse dominansie binne feminisme. Afrika-vroue het besef dat hul onderdrukking verskillend is van dié van wit vroue en daarom is ‘n ander proses van bevryding nodig. Die Westerse feministiese praktyk om swart vroue by die bestaande feministiese ontologie te voeg, is nie voldoende nie omdat hul unieke ondervindings van slawerny, kolonialisme, onderdrukking deur mans en armoede nie uitgedruk word nie.

‘Womanism’ het tot stand gekom as gevolg van ‘n eksplisiete rassekritiek teen feminisme. Dit is ten gunste van die positiewe uitbeelding van swart mense. Dit word gekenmerk deur kulturele kontekstualisasie, die sentraliteit van die gesin en die belangrikheid daarvan om mans in te sluit.

Die geskiedenis van vroue in Suid-Afrika is verwant aan hul geskiedenis van onderdrukking as gevolg van patriargie. Vroue van verskillende rasse, kulture en klasse het patriargie op verskillende wyses in en variërende mate van erns ervaar. Onder voor-koloniale patriargie het vroue min sê gehad oor huwelikskeuses omdat mans dié besluite gedomineer het.

Die Nederlandse en Britse patriargale erfenis het neerslag gevind in die ideologie van die volksmoeder. Onderwyl dit veral manlike skrywers was wat die beeld van die vrou as versorger en tuisteskepper bevorder het, het vroue self ook hieraan ‘n aandeel gehad, sodat die volksmoeder volwaardig deel geword het van die Afrikaner nasionalistiese mitologie. Alhoewel middel- en werkersklas vroue met dié beeld geïdentifiseer het, het nie alle Afrikaanse vroue die ideologie aanvaar nie.

Onder die Victoriaanse erfenis was Britse vroue beperk to die private eerder as die openbare lewe. Die skeefgetrekte onderrigsisteem wat vroue in huishoudelike loopbane gekanaliseer het, die mag van mans oor hul vroue se eiendom en ‘n tekort aan toegang tot mag en geld het verseker dat vroue by die huis gebly het.

Wit Engelssprekende-vroue het die grootste geleentheid gehad om patriargie uit te daag vanweë hul toegang tot onderwys en die blootstelling aan liberale waardes, sê prof. Pretorius. Liberale vroue soos Helen Joseph en Helen Suzman het ‘n belangrike rol gespeel om in 1930 stemreg vir wit vroue in Suid-Afrika te verseker en het voortgegaan om ‘n rol te speel in die bevryding van swart vroue gedurende die vryheidstryd.

Die feminisme wat onder swart vroue ontwikkel het, was ‘n erkenning van die gemeenskaplike stryd met swart mans om die verwydering van die juk van eksterne onderdrukking en eksploitasie. Swart vroue in aktiewe en onafhanlike politiese rolle het tegelykertyd mans se aannames omtrent hul meerderwaardigheid asook die rassewette van die staat uitgedaag. Daarom kan ons sê dat die feminisme wat hier ontwikkel het, te voorskyn gekom het as gevolg van vroue se betrokkenheid by en toewyding tot nasionale bevryding, sê prof. Pretorius.

Institusionalisering is nie herlei tot magsvoordele nie, want gelykheid is nie in beleidsprogramme geïnkorporeer nie. Die hervestiging van sleutel aktiviste van die vrouebeweging in die regering het die stryd om genderbillikheid verander na ‘n projek wat deur die regering gelei word, sê prof. Pretorius. Ongelukkig word terreine van verandering buite die grense van die regering verwaarloos. Dit kan slegs aangespreek word deur ‘n aktiewe en feministiese stem in die burgerlike samelewing.

“Dit is my oortuiging dat formele instellings vir vroue binne die staat oor die lang termyn slegs effektief kan wees indien daar ‘n effektiewe feministiese vroue-beweging buite die staat in stand gehou word wat die grondslag waarop sosiale beleid gevorm word, kan uitdaag en bevraagteken. Daarom, A luta continua (die stryd duur voort),” sê prof. Pretorius.

Mediaverklaring
Uitgereik deur: Lacea Loader
Mediaverteenwoordiger
Tel: (051) 401-2584
Sel: 083 645 2454
E-pos: loaderl.stg@mail.uovs.ac.za
2 November 2004

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