Hello South Africa and a special hello to DSSA (Down Syndrome South Africa) !
MANOA: It is a real pleasure to have you here! I remember my trip to South Africa a few years ago and I have a very good memory of your beautiful country, full of history and such welcoming people! Welcome to Manoa and we are very happy to have you here ! Would it be possible to start with a quick presentation of DSSA and tell us how things are going lately?
DSSA: Down Syndrome South Africa, DSSA is a non-profit parent advocacy organisation that was first established in 1986 and was officially registered as an umbrella body in August 2000. Today we have 12 regional organisations across South Africa, consisting of associations, support and outreach groups that render support and services to persons with Down syndrome and their families.
Our Mission: We are committed to improve the quality of life for all persons with Down syndrome and other intellectual disabilities.
DSSA has over the past years implemented many programmes and services to support families in raising a child with Down syndrome as well as advocate nationally on many issues affecting the rights of persons with Down syndrome.
DSSA is currently working on a project called Access to Justice for Persons with Intellectual Disabilities in South Africa. We would like to understand the barriers persons with intellectual disabilities and their families face when interacting with the justice system. Many of these barriers are systemic barriers which requires legislative change around legal capacity as well as reasonable accommodations.
MANOA: Down syndrome can still be perceived in some African countries as a curse. How is Down syndrome perceived by South Africans, especially by the younger generation?
DSSA: There is definitely more awareness around Down syndrome but still a huge gap in terms of knowledge around the condition. Negative attitude and stereotypical believes still remain a huge challenge at grass root level.
There is a component of disability incorporated in the school curriculum to make the younger generation without disabilities aware of disability.
Children with disabilities remain segregated.
MANOA: What stereotypes still remain and what can be done to avoid them?
DSSA:
- That Down syndrome is an illness and they are referred to as sufferers of Down syndrome and this is often confused with mental illness;
- That Down syndrome is a curse brought down by the ancestors;
- They will not cope in a mainstream school;
- They are incapable of achieving life goals;
We attempt to dispel these myths by showcasing positive stories on the amazing things that our children and adults with Down syndrome are achieving in their every day lives. Hopefully one day we will break down all these stereotypical beliefs.
MANOA: Does the educational system allow children to be in contact with children with special needs? If yes, how do you think it can benefit others? If not, why and what needs to change?
DSSA: Unfortunately inclusive education has not taken off as in other Western countries, the focus is still a lot on special schools despite the overwhelming evidence to support inclusive settings, not only for the person with a disability but also for those children without a disability. Children with disabilities remain segregated and where attempts are made to integrate them into mainstream schools it often lacks adequate funding, qualified educators and reasonable accommodations.
MANOA: South Africa is such a big country! How are you helping young adults enter the professional world, especially for those who do not live in towns and big cities? What are the most common jobs?
DSSA: Lack of formal education unfortunately contributes to lack of economic opportunities. The socio-economic conditions in townships is not conducive to promoting employment opportunities and so most adults who are able to work are often just sitting at home. Lack of sufficient skills training centres and transport also contributes to low levels of employment. Currently the only avenue available is protective workshops and not everyone has access to this.
In 2021 DSSA developed the supported employment manual for persons with Down syndrome, it was hoped that with this manual employers will have a better understanding on the support systems that persons with Down syndrome require in a formal employment setting.
It is unfortunate that jobs do tend to fall into a certain category and not based on the persons interest or strengths. So stereotypical jobs like retail packers, hospitality industry and animal grooming are the most likely choices.
See their capabilities and promote opportunities for them to be included and to participate.
MANOA: Are companies generally open to hiring someone with Down syndrome?
DSSA: No, this is one of the most difficult things to change as employers don’t see the benefits of employing persons with intellectual disabilities, such as Down syndrome. It requires a huge mind shift and positive examples that it can be done.
MANOA: We really like how your website includes the main questions people have about Down syndrome and we really invite everyone to have a look at your answers! Would you say that there is still a huge job to raise awareness about Down syndrome in South Africa?
DSSA: Awareness has a role to play but it requires more than awareness it requires focused and planned action on the part of each one of us. Every small action taken by everyone will collectively lead to visible changes not only in mind set but in making disability mainstreaming the norm rather than the exception.
MANOA: What are the main goals of the DSSA and how are you planning on achieving them?
DSSA: Our main goals is capacitating our members in terms of the tools required to support the families on the ground;
Advocacy campaigns on issues preventing persons with Down syndrome from effective participation in society.
Extending our carbon footprint as we have still not reached those in far outer rural areas of South Africa.
DSSA is working on a revised strategy on how we can better our services and reach those in rural areas.
MANOA: What would be your three recommendations to a South African wishing to make a difference concerning Down syndrome in his/her country?
DSSA:
See the person first, the condition is secondary;
See their capabilities and promote opportunities for them to be included and to participate;
Support our work through financial aid, spreading awareness and volunteering so you can see disability through a different lens and be exposed to the lived experiences of someone with Down syndrome.
MANOA: Thank you very much for your time! I really appreciate it ! Is there one last thing you would like to say to our followers or to people related to Down Syndrome?
DSSA: To all the people with Down syndrome: Never stop dreaming and continue to show the world that you are more than your diagnosis.
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