March 21st WDSD
World Down Syndrome Day was first observed around the world in 2006. In 2011, the United Nations assembly declared March 21st as World Down Syndrome Day with the stated aim of raising public awareness. The twenty first day of the third month was chosen to represent the third copy of the twenty first chromosome which is the cause of Down Syndrome.
Since 2006, there certainly has been greater public awareness. The rise of social media has been a factor as there are now parent forums galore and some high- profile blogs such as I am River, Don’t be Sorry and Down’s Syndrome – Raising Awareness and Shifting Attitudes . The Lose the Label campaign has done much to challenge perceptions by the powerful use of images and emphasis on first person language, which makes people focus on the individual and not the condition. Quite a few advertising campaigns now include people with Down Syndrome which was unheard of only a decade ago.
Awareness Comes Through Representation
Our oldest son Ben was born in 2007 and was diagnosed with Down Syndrome when he was four days old. Initially, I was in shock, mainly because I had never met anyone with the condition and I had no idea what the future would hold for our family. I had seen an episode Inspector Frost which featured a character with Down Syndrome. This episode was seen as ground breaking when it first aired in the nineties as it was possibly the first prime time television show to have featured a main character with the condition. It was a fairly grim story line, but fortunately it held a very positive memory for me. I watched the episode with my parents and as a result had discussed Down Syndrome with my Mum who had been a paediatric nurse at a time when outcomes for people with the condition were much worse than they are now in practically every respect. Yet my mother was resoundingly positive about Down Syndrome, an attitude which helped me enormously in those early difficult days.
Out of Sight, Out of Mind
In the U.K., approximately one in a thousand people have Down Syndrome which isn’t a high proportion and is one reason why I was in my thirties before I met anyone with the condition (my son!). I grew up at a time when people with Down Syndrome were often separated from the rest of society. There was little representation in the media. People with Down Syndrome were essentially invisible. My shock and distress when I was given my son’s diagnosis had much to do with having literally no idea what it meant. My hope is that new parents today are better informed. I believe in general they are which illustrates the importance of raising awareness with events like World Down Syndrome Day.
Representation is Vital
In terms of representation, television has a vital role to play. Disability is a part of normal life and experience and television needs to accurately reflect this. There is a long, long way to go, but I do feel representation of people with Down Syndrome is improving. All the main soap operas have featured characters with the condition. (The Minute Mart in Eastenders has a collecting tin for the Down’s Syndrome Association by the cash register. I adore this detail!)
My favourite character with Down Syndrome on television just now has to be Ralph form The A Word played by Leon Harrop. Ralph is such a positive role model. He has a job and girlfriend, a dry sense of humour and isn’t averse to standing up to his boss, played by Christopher Ecclestone. Call the Midwife has recently introduced the wonderful character of Reggie played by Daniel Laurie. Whilst I am not convinced that a young man with Down Syndrome would have been so integrated and included in his community in the early 1960s, this show has a huge following so undoubtedly has raised awareness. The Silk Worm (another programme with high viewing figures) featured a powerful and moving performance by Sarah Gordy, and accomplished actress who has appeared in a number of other high profile shows, including Call the Midwife. I am encouraged that children with Down Syndrome are also appearing on television. The Dumping Ground on CBBC features Finn, a teenager played by Ruben Reuter. This show, and its predecessor, The Story of Tracy Beaker have a good track record of portraying children with disabilities as ordinary people, with the same hopes and fears as everyone else. This is a powerful message for prime time viewing for children, and so different to what I experienced as a child.
So Much to Celebrate
Increasingly, there are people with Down Syndrome in the public eye. Steven Brandon’s extraordinary performance in the film My Feral Heart didn’t go unnoticed by the critics including Mark Kermode. Frank Stephens, actor and Special Olympian made a powerful speech last year to the U.S. congress about living with Down Syndrome which went viral. There was huge publicity recently about the first ever ‘Gerber Baby’ to have Down Syndrome. The stunning wildlife photographs of Oliver Hellowell are known around the world, and the artist Emma Anderson has had her work shown at the Tate Modern. Obviously, the many thousands of people around the world with Down’s Syndrome who aren’t famous are equally to be celebrated. I am simply drawing attention to the rich diversity of talent and creativity within the Down Syndrome community.
Strong, Proud, United
This isn’t an easy time for people with Down Syndrome. Years of austerity have led to cuts in services and people with learning disabilities have been particularly vulnerable. Children and adults with the condition face an uncertain future because of changes to support services. This situation is not unique to the U.K.; the global economic crisis has affected people with disabilities around the world. There has been much controversy around prenatal testing and fears that Down Syndrome could over time be ‘screened out’. Despite all this, the Down Syndrome Community has been resilient and undaunted. The phrase ‘The Lucky Few’ is increasingly common and is appearing on car stickers and t-shirts. Many people are having ‘Lucky Few’ tattoos to demonstrate pride and celebration of the Down Syndrome community. Whilst tattoos and t-shirts are not to everyone’s taste, the sense of purpose and determination that these images represent can’t be ignored.
Happy World Down Syndrome Day!
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