• Shiranee Joseph de Saram Foundation MD Praveena Joseph de Saram on a need for people to end the stereotypes

The World Down Syndrome Day was commemorated on 21 March and the call this year was to ‘End the Stereotypes’ that work against people with Down syndrome and prevent them from living a normal life. Research shows that Down syndrome occurs when a person is born with an extra partial or whole copy of chromosome 21. The United Nations says that the estimated incidence of Down syndrome is between one in 1,000-1,100 live births worldwide. Every year, approximately 3,000-5,000 children are born with it, throughout the world. The Shiranee Joseph de Saram Foundation in Nawala is a good example of ending stereotypes and embracing inclusivity. We see persons with Down syndrome living and loving life every single day. The foundation’s Managing Director (MD) Praveena Joseph de Saram was on ‘Kaleidoscope’ to explain the myths and misconceptions surrounding persons with Down syndrome. And, we also walked through a day in the life of the foundation’s Administration Assistant Teruni Thalgodapitiya, who described her daily experience thus: “I wake up at about 8.30 a.m. and then go to school, where I also work. I help with the workshops, which I enjoy doing as I get to talk to everyone and tell them what to do, and because I like giving ideas to make things better, and I also help conduct the programmes. I go home at about 1.30 p.m., have lunch, listen to music, and then go to bed. As far as family support is concerned, they are very positive and supportive and we also take time off and go on holidays, which are happy times”. 

Following are excerpts from the interview with Praveena Joseph de Saram:

Could you tell me more about Down syndrome in Sri Lanka?

Down syndrome in Sri Lanka has an incidence rate similar to anywhere else in the world. There are specific challenges here relating to awareness about the condition and the difficulties that families face. Sri Lanka has a very kind culture and it is something that we take great pride in. However, when awareness is missing, you don’t know how to be kind. That is the gap that exists in Sri Lanka. This leads to all sorts of things, from the lack of support for the family and the vagueness of the legislation. 

What have been your rewarding moments while working at the foundation?

So many. Lately, we have been changing the way that we do things here. We are shifting the focus to the experience beyond school, to providing opportunities for the rest of their lives. One of the loveliest moments is when they receive their first stipend. They go out and buy something for their mothers, families, or even for themselves. The smiles on their faces as they show off the purchases made with their stipends are priceless. Also, working together at the foundation gives them a feeling of contributing to something. This is their institution and so the joy that they feel at the prospect of having given something back to this place is palpable. 

What lessons have you learned?

We have learned that we need to pivot our focus to what lies beyond school. There are other organisations and government bodies that cater to the needs of younger people with Down syndrome, but, we don’t tend to focus on helping them after school is over, for the rest of their lives. Once you reach an older age, the rest of life is not really catered to for people with Down syndrome. Social opportunities, enrichment, and making a valuable contribution to society are things that affect us psychologically and we are trying to cater to those needs, after what we have learned over the years. We have learned this from our colleagues with Down syndrome as well. They finish school and come up to us and say, “We want to work”.

How is Sri Lanka faring in the inclusion of differently abled people?

There is wording that supports inclusion in our legislation. There is a Public Administration Ministry Circular No. 27 of 18 August 1988 that speaks about the public sector providing 3% employment opportunities to people with disabilities, but, it is obvious that that provision has not been met. Also, when it comes to people with intellectual disabilities, the specific problem still remains: the lack of understanding about what an intellectual disability is. There are opportunities for those who are visually and hearing impaired, but, working with people with intellectual disabilities such as Down syndrome requires a bit more understanding and a different process. Society still has stigmas associated with people with intellectual disabilities and their fear due to a lack of understanding is standing in the way of true inclusion. 

What misconceptions do we have about people with Down syndrome?

The biggest misconception is that everyone with Down syndrome forms a homogenous population with the same limitations and with restricted abilities, but that is really not the case. The examples are here at the foundation. These persons do a variety of things. Varsha, for instance, likes tie dye machines and can do it better than anyone else. Thalgodapitiya constantly gives me tips on how to run my life and they are really valuable tips. I made the mistake of forgetting to take a notebook to a meeting with Thalgodapitiya one day, something that I still regret because she gave me so many product ideas at that meeting. I had no way of writing it down. People must stop looking at the label ‘Down syndrome’ and seeing only the condition. They must see the potential and personality of the person and not the label.

What kind of support do people with Down syndrome need from their families?

They need to understand that persons with Down syndrome have the potential to be independent. Families should facilitate the education of things that help with being independent. People are born with certain abilities, but much of who they become has to do with their surroundings and with the opportunities that they receive. Unfortunately, people with Down syndrome have limited access to these opportunities. As a result, there are those who come to the foundation without having learnt very many functional skills at the age of 25. It is difficult for us to set them on a path to independence. People with Down syndrome can earn wages, they can be independent, and can participate in many aspects of life, and that is something that they need. They are just like you and I. They have goals, ambitions, and dreams. When these goals are not facilitated, they end up depressed, just like any of us would be if that were to happen to us.  

What have people with Down syndrome told you about their negative experiences due to their disability?

A lot of these experiences have to do with the times when they try to take their place in society and the interactions that they have. Once a mother told me that while she was walking down the road with her child, someone on the road had passed them but then turned back to face the mother and child and had told the mother that they were sorry that she had this misfortune of having a child with Down syndrome. These people had then told her that she would have to handle it by herself as that was her lot in life. The mother was heartbroken because someone actually approached them to tell her that she was ‘unlucky’. Another thing that we often hear about is how families distance themselves from people with Down syndrome, because of an unfounded fear. I spoke to a grandmother who was taking care of their older grandson who has Down syndrome. She said that once the child was born, her whole family distanced themselves from her and her grandson and so, as she gets older, she has no support outside her neighbours. It broke our hearts to hear that.

What does the rest of the world need to understand about people with Down syndrome?

People with Down syndrome are valuable members of society. They deserve respect and they deserve to be included in all aspects of society. Our colleagues like Varsha, Thalgodapitiya, and Dilshan are fantastic at their work and we love working with them. They are our friends and we hang out with them after work too. The joy that they bring to their workplace is amazing. 

Are corporates doing enough to facilitate the inclusion of people with Down syndrome into their teams?

I think that we are in a special moment in Sri Lanka, because, while we do outreach to educate people on the abilities of people with disabilities, we have also had companies reach out to us. This is exciting and new. Sometimes, there are mandates to include people with disabilities in work projects and we are able to show them how it can be done. We have had some successful pilot projects and a number of lessons learnt and best practices that we use to help these companies include persons with disabilities into their teams. 

What is your favourite part about the community of people with Down syndrome?

I have always found them to be a particularly joyful group of people. I love walking into work and being greeted by my friends. I have known a lot of them since I was younger and I have grown up with a lot of my friends and colleagues. It is a joyous place to be. Their attitude towards life is one of happiness and that is quite inspiring.

(The writer is the host, director, and co-producer of the weekly digital programme ‘Kaleidoscope with Savithri Rodrigo’ which can be viewed on YouTube, Facebook, Instagram, and LinkedIn. She has over three decades of experience in print, electronic, and social media)