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A warrior for inclusion

29 Aug 2022

According to the United Nations (UN), approximately 3,000-5,000 children are born with Down syndrome worldwide, a chromosome disorder resulting from an extra partial or whole copy of chromosome 21. While the occurrence for the syndrome remains yet unknown, Down syndrome is widely prevalent across the globe but yet remains a syndrome with little awareness and in some countries, wide stigma. While it is apparent that the quality of life of people with Down syndrome can be improved if healthcare needs are met – including monitoring of mental and physical health, physiotherapy, speech therapy, and occupational therapy – optimal quality of life can be achieved with informed care and support, which for the most part is also lacking even in the most advanced economies. The UN declared 21 March as World Down Syndrome Day to raise awareness and to create a culture of inclusion in the wider communities for people with Down syndrome. An overarching facet of this declaration embeds the fact that persons with Down syndrome can participate in mainstream society and fulfil individual potential to the optimum. Sri Lankan-Italian writer and performer Angela Bettoni has Down syndrome. A prolific writer since the age of eight, she has already published four books and has just completed her fifth novel – Inner Demons, as part of the Artivisti Project. She was one of four young people to receive the Artivisti Award for Activism through the Arts from the Arts Council of Malta and Agenzija Zghazagh (Malta’s Youth Agency) for 2021-2022. Bettoni is an inexhaustible advocate for the inclusion of persons with Down syndrome – travelling widely, speaking on talk shows, sharing ideas, experiences, and knowledge, and empowering others to advocate for equal rights. She is unafraid to reach out to key stakeholders – whether at the highest decision-making level or to the youngest who live in a world of uncertainty – to bring about positive change. Bettoni was the first student with Down syndrome to complete her Ordinary Levels (O/L) in Malta. She sits on the Executive Committee of the Commonwealth Children and Youth Disability Network and is one of 10 members of the Young People Disability Rights Forum of Malta’s Commission for The Rights of Persons with Disability. In this interview on “Kaleidoscope with Savithri Rodrigo”, Bettoni discusses the drive she had to go into advocacy for the inclusion of persons with disabilities and why it is important to speak more openly about not just Down syndrome but disabilities in general. Following are excerpts: You’re just 21, Angela, and you’ve been working tirelessly for inclusion into society for persons with disabilities. What actually put you into this role? Back in 2019, I was given European funding to go abroad. I travelled to London for three weeks as part of this project. I took part in this inclusive theatre called Chickenshed, which focused on holistic inclusivity, not just on disabilities. This is what showed me that inclusion can be possible. When I returned to Malta, I took part in the Opening Doors Association, a theatre group for adults with intellectual disabilities, and with them, I got the opportunity to perform in Malta’s two first mixed-ability performances – one called The Fig Tree and the other Automaniacs, a performance for children.   What were the challenges you encountered along the way and how do you see people reacting to you? In Malta, the mentality is different – people tend to talk down to you, they act like you don’t understand much and sometimes they even come across as overprotective. In my case, these attitudes were prevalent not really because I have Down syndrome, but because I look young. I often have people who don’t know me mistaking me for a child and not treating me for my age. But I don’t want to hurt their feelings by correcting them when they use certain terminology which you use when you talk down to a child or talk to me in a babying tone. Another common fact is that people make assumptions about my abilities. As an actor, it is tough to get roles in a mainstream setting as their standards are high and I have to work harder than others to make my speech clear. As a writer, the main problem is to find a publisher but I don’t think that this is just because I have Down syndrome but it is something that is difficult for every writer.   You’ve done really well on the publishing side given that you have now published four books already and a fifth one has just been completed. Tell me more about your new book – Inner Demons. In 2020 I got an Artivisti Award for Activism through the Arts from the Arts Council Malta and the Maltese Youth Agency (Agenzija Zghazagh). I have been working with my mentor Clare Azzopardi, a well-known Maltese writer, to rework and improve my book, which is a novel for young adults. This book is an “own voice” book and it’s a complicated love story, with a character who has Down syndrome dating a boy who does not have any disability. My aim through this book and through my writing is to raise awareness by sharing my own experiences and achievements and to be a role model for children with Down syndrome, helping raise expectations from members of their families and teachers too, showing them that we are who we are!   You have been visiting Sri Lanka since you were a child as you have relatives here. You have also interacted with and know the perception of people with Down syndrome in Sri Lanka. What do you think can be done to create a more inclusive Sri Lanka? The subject of Down syndrome has to be discussed more openly and talked about more. More awareness must be raised, especially among schoolchildren. This awareness must come from a very young age because that is the root when children learn how to treat others who are different to them. There must also be far more emphasis on the training of parents, teachers, carers, and those around persons with disabilities. I think that it’s very important to talk more about the topic of Down syndrome in general and what people with Down syndrome can do if they are given the correct support. Every child should have access to mainstream education and that can happen with the appropriate support.   This lack of awareness also means people don’t know how to react when meeting a person with Down syndrome or other disabilities for that matter. What advice can you give? Well, when you meet a person with Down syndrome for the first time, treat them as your equal, your full equal. Yes, we are born with Down syndrome, but that does not define who we are, because we are entitled to have the same rights as everyone else. Sometimes you may need to be more caring and supportive but don’t overprotect us or do stuff for us when it is evident that we are capable of doing some things ourselves. Let us take our time doing these things. I want people to know that no matter what disability we have, we are not our disability, we are people, just like everyone else.  


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