15 Mar No Assumptions, Please!
Wear Your Crown for World Down Syndrome Day 21.03.21
Hi all! Today my blog post is dedicated to World Down’s Syndrome Day (WDSD) which is on 21st March. If some of you don’t know, WDSD falls on 21st March like the three copies of Chromosome 21 in Down’s Syndrome (21.03).
For WDSD 2021 I got some friends to help me to do an inclusive music video. The title of this video is “6 teens, 3 extra chromosomes, 1 message | World Down Syndrome Day 2021”. Through this video I want to show that although people who have Down’s Syndrome have one extra copy of Chromosome 21 this is not a mistake, this is what makes us unique.
I got the idea to do this video through a disability advocacy capacity development workshops organized CCYDN (https://includemetoo.org.uk/) that I took part in. In one session we were talking about how to use social media to promote inclusion. In this session we discussed a music video which had been done for World Down’s Syndrome Day, called “50 mums, 50 kids, 1 extra chromosome” that I loved. So I was inspired to do the same as I really enjoy singing even though it’s not my forte. I had the idea of working with five friends to record a YouTube cover for WDSD this year. The idea was to have a mix of teens with and without Down’s Syndrome, to make it inclusive and show that everyone is equally “normal”. Most advocacy videos are done by parents or organisations and they only show those who have Down’s Syndrome, so I wanted this to be different.
It was quite a journey to make this video happen. Before anything my mum had to write to the owners of the song and Netflix for permission so we would be able to use the song. But they never replied, so we went ahead. At the same time, we contacted a video editor to see if he could help us to edit the video, but he didn’t get back to us. The first singer I asked was a friend of mine from Sri Lanka. We were connected on WhatsApp and discussed the project. After I gave her a few directions on what she was meant to do it was very quick for her to give me the piano accompaniment. Then she recorded herself singing to the song and sent it to me. After that I got in contact with one of my friends who has Down’s Syndrome to see if she would like to sing and she agreed and brought on board her boyfriend as well, who also has Down’s Syndrome. I then contacted several of my close friends from SOPA (School of Performing Arts) but most of them were too busy with exams and other productions but two of them managed to come through.
After I got the singers together, I first had to send out the lyrics of the song to have a read through. We then asked them which part they would like to sing and to record them. When I first recorded my part I sounded terrible and I was really out of tune but by practising it every day I improved and my pronunciation and diction became better even though there were a few times when I would get stuck on a word or forget something. On the day before everyone was supposed to send the videos one of my friends had to drop out but he managed to get someone else to step in and sing his part. The new singer was also a good friend of mine from SOPA. The whole thing was quite emotionally challenging for me as some of my friends were struggling to learn the lines and to sing the words clearly.
After that we sent all the videos to the editor, he was quick in getting the first draft done. After the first draft was sent to us my mum and I gave him a few notes to improve on some of the mistakes that were there.
But then once we thought that everything was done another problem cropped up as we discovered that the singer from Sri Lanka was not allowed to be seen on YouTube as the girl’s school that she goes to (which is my mum’s old school as well) doesn’t allow their students to be on social media! We had to ask for permission. At that point I had to wait to post the video onto my social media as we still didn’t know if we would have permission to share the video but in the end the headteacher agreed to let my friend appear in the video.
Please watch the video https://www.youtube.com/watch?v=5OzDLQcqdg4 and help us to share it if you like it.
The message which I would like to give you all for World Down Syndrome Day is let’s wear our crowns and let us raise awareness together, whether we have a disability or not.