Breaking Down Stigma: An Interview with Ancella Ramjas on Down Syndrome in South Africa

We recently had the pleasure of speaking with Ancella Ramjas, the national executive director of Down Syndrome South Africa (DSSA), about her passion for advocating for individuals with Down syndrome. Ramjas' journey began in 1997 when she became a parent to her daughter Thameez, who was born with Down syndrome. Thameez has taught Ramjas more than she could have ever imagined and has given her purpose, leading her to join DSSA. In this interview, Ramjas provides insights into Down syndrome, the challenges individuals with this condition face, and how we can create a more inclusive society for them. She also shares her ambitions for the DSSA team in 2023.

1. Greetings, Ancella Ramjas. Firstly, thank you for taking the time to chat. To kick off the discussion, what sparked your passion for down syndrome?

I became a parent to my beautiful daughter Thameez, who is now 26 years old. My journey started in 1997 when she was born; Thameez has taught me more than what I have taught her, she has given me purpose, and it is through her that I am where I am and have joined Down Syndrome, South Africa.

2. Down syndrome is a condition that could easily be misinterpreted. Please give our readers a very simple understanding of what down syndrome is.

Down syndrome is a chromosomal genetic disorder caused by a full or partial extra copy of chromosome 21, commonly referred to as Trisomy 21. This means persons with Down syndrome have 47 chromosomes in each cell compared to the typical 46.?

It is important to note that it is not an illness, so they do not suffer; it is a lifelong condition that cannot be cured. It also occurs equally across all races, religions, and socio-economic groups.

3. How common is a Down syndrome in South Africa?

We have no real data on how many persons with Down syndrome there are in South Africa, but the prevalence rate is estimated at 1 – 500 live births.

4. Children with down syndrome face many challenges when growing up. Some become victims of bullying and exclusion from their peers. Sometimes parents don't have the knowledge and support to nurture their children.

5. What are your ideas and thoughts about creating a society that will be much more friendly for children with Down syndrome?

It is all about the fear of the unknown, and therefore people do not often know on how to react or interact appropriately and may bully or exclude based on their fear of disability. it is important to educate and raise awareness about the condition and to show people that children and adults with Down syndrome are just like everyone else. They need the same love and support to thrive in society. Persons with Down syndrome need to be seen as more than their diagnosis, they are a person first, and their diagnosis is secondary.

We need to create a society that promotes inclusion and to see disability through a Human Rights lens, entitled to the same rights as everyone else and not see them as recipients of pity and charity.

6. What can the government and other associations like DSSA do to promote the inclusion and support of children with Down syndrome to participate in ordinary classrooms?

Our member associations are already doing fantastic work supporting families and as an organisation, we do parent and teacher training on how to accommodate a learner with Down syndrome into the classrooms. Government must collaborate and support our organisation’s work,?and make funding available to bring in the relevant support and reasonable accommodations needed to accommodate the learners and teachers not only at special schools but at mainstream schools as well.

7. Yesterday, we celebrated World Down Syndrome Day. What has been the biggest lesson you learned from someone with Down syndrome?

Over the years, I have had the privilege to have worked with many wonderful individuals with Down syndrome. They have all taught me something, but my daughter has been my biggest inspiration; she is my discovery challenge. What I have learned is never to put a ceiling to their dreams and aspirations; what they need are support, encouragement and opportunities. They have already demonstrated that they are more than their disability; they are capable of many Xtra-ordinary things.

8. You are currently the national executive director of Down Syndrome South Africa (DSSA). You have ambitions to bring change for South Africans with Down syndrome.

My focus and that of the organisation has always been to improve the quality of life for all persons with Down syndrome, including their families. We have done wonderful work over the years, but there is still much work that still needs to be done to eradicate the stigma that is?attached to the condition. We must succeed in bringing full acceptance and inclusion so that all persons with Down syndrome can take their rightful place in society.?

9. What could people expect from the DSSA team for 2023?

On the 21st of March, we celebrated World Down Syndrome Day, which coincides with Human Rights Day in South Africa. The theme chosen to mark this year’s celebration is With Us Not for Us; under this theme, we will address three key areas; the right to legal capacity, good practices in supported decision making and making communication accessible for persons with Down syndrome. Most often, persons with intellectual disabilities cannot access their right to legal capacity by entering into legal contracts, such as opening a bank account, buying or leasing property, entering into a legal marriage contract or making decisions that are in their best interest.

Opening the doors to justice for persons with intellectual disabilities. With the scourge of GBV, very little attention has been paid to persons with disabilities. Through our Access to Justice project, we hope that we can improve the situation for persons with intellectual disabilities, specifically those with Down syndrome. We will be developing resources to empower our families on the criminal justice system and support systems available so that they are able to access justice.

10. Most of our readers are people who serve within associations. We are always looking for industry tips from leaders within various associations on how to improve the performances of South African associations.

What are the 3 communication tools every association needs to have in 2023?

Make information available in Easy Read format for persons with Down syndrome.

Communication in an accessible format to our community is very important – Take the Covid-19 pandemic for an example. There was very little information available to persons with Down syndrome to enable them to understand hygiene protocols and social distancing.

Make sure that?information is shared in a way that people can access it. Not everyone can follow text but might require information in pictorial or voice prompt format.

While we live in a progressive digital world,?be mindful of the many people who do not have access to smart devices and data.

11. In the last words, would you love to share with our community?

We all have a responsibility to make a difference, this is the only way we can break barriers and create a just society. Thank you for this opportunity to inform your readers about Down syndrome. Please support our work by visiting our website: www.downsyndrome.org.za?