Living with Down syndrome: 'It's a genetic accident'

Life according to Maria Jose Paiz Arias, a 19-year-old Panamanian woman with big ambitions - and Down syndrome.

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    Maria Jose Paiz Arias [Alexander Arosemena/La Prensa]
    Maria Jose Paiz Arias [Alexander Arosemena/La Prensa]

    At 19 years old, Maria Jose Paiz Arias already has an impressive list of achievements to her name. She has starred in Central America's first commercial inclusive play, she has spoken at the United Nations headquarters and she has her own vlog on the website of one of Panama's most-read newspapers. To mark World Down Syndrome Day, Maria Jose - or "Majo" - talks about living life with a third copy of chromosome 21. 

    "Many people think Down syndrome is a disease. It makes me feel bad when people think that there's something wrong with me, because I was born like this and I can't change. I know I'm not normal, but Down syndrome is not a disease, it's a condition - a genetic accident.

    People often have wrong expectations of me. They're afraid I'll do something bad or that I don't know how to do anything. Other people think I'm always happy and excited, which is definitely not true. The cure to people's attitude towards me is getting to know me better. Over time, I can teach these people who I am and show them that I'm a good person.

    I know very well that some things are more difficult for me than for others. Making friends can be difficult for me, for example, because I don't always understand other people. There are a few things I need to make life easier for me: help - because there are some things I cannot do alone - support and attention.

    'It makes me feel bad when people think that there's something wrong with me, because I was born like this and I can't change,' says Maria Jose Paiz Arias [Alexander Arosemena/La Prensa]

    But there are many things for which I have a talent as well. I am good at dancing and writing and I have a talent for giving advice. Sometimes I talk to parents who have just had a baby with Down syndrome. I tell them how to treat [children with Down syndome]: that they have to try to understand them and listen to them when they give their opinions. And I tell them that they have to support them with love and affection. What you give you get back - when you give nothing, you get nothing back.

    Down syndrome is not a disease, it's a condition - a genetic accident

    Maria Jose Paiz Arias

    I played the lead role in the first inclusive play to be staged in Panama, La Cucarachita Mandinga, in 2014 in Panama City. I auditioned and when they told me I got the main part I went 'Woooaah' - you have no idea how shocked I was. The most difficult part of preparing for the play was memorising the lines - there were so many pages. What I learned from the experience is to work better in a team. That was always difficult for me, but I think I've gotten much better at it now. What surprised me the most about being in the play was the love we got from the audience, when they would clap for us. 

    And there are other things I've done that I'm proud of. I spoke at the headquarters of the United Nations about Down syndrome and I got very good reactions to that. I'm a good speaker - very emotive and I speak my mind. Last December I graduated from high school. I have a vlog called Segun Majo on the site of a Panamanian newspaper and my own Instagram account

    There are many things I want to do in the future. I want to be a TV producer. I want to keep acting because it makes me happy. I have had a boyfriend for two years. He is 25 and we met while we were preparing for the play. I like everything about him. I like his family. But what I like most about him is that there is no one else like him. We're thinking about getting married but he hasn't asked me yet.

    Right now I'm in Madrid taking courses on how to do adult things like cooking from recipes and filing documents in alphabetical order. There are lessons on living on my own which teach me about saving electricity and what to do if something breaks down. In May, I'm going to university to study communication and audiovisual production. I'm very excited - excited, nervous and afraid, because I'll be doing many new things that I haven't done in school before and that seem very difficult. But being nervous is normal, it happens to everyone. I just keep moving forward." 

    'When they told me I got the main part I went "Woooaah" - you have no idea how shocked I was,' says Maria Jose Paiz Arias [Raphael Salazar/Al Jazeera]

    SOURCE: Al Jazeera News


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