Sparkle about Down’s Syndrome Awareness Week

Awareness Week is based around the UN's World Downs Syndrome Awareness Day on 21 March

Down’s Syndrome Awareness Week is over for another year. At the time of writing, donations and sponsorship money is still being collected but income, although essential to Down’s Syndrome Scotland’s ongoing work, is not the only target. Equally important is awareness. Our vision is that society fully accepts and includes people with Down’s syndrome and this still requires us to change attitudes in 2015. Quantifying awareness and societal attitude shift, however, is not quite as easy as counting coins.

Awareness Week is based around the United Nation’s World Down’s Syndrome Awareness Day on 21 March every year. Down’s syndrome does not stop at borders (or race, class or gender lines for that matter) so it’s no surprise that there is global interest and, for DS Scotland at least, it is the focal point of the calendar with 2015 being no exception.

Central to our activity this year, was our exhibition at the Scottish Parliament. This afforded us one-to-one interaction with MSPs, the key decision makers in our society. Unfortunately, in order to indicate where policy change could improve the lives of people with Down’s syndrome, their family and their carers, it is essential that we highlight the challenges that individuals with Ds face that are under-, over- or even misrepresented at times. These demonstrative statistics can be hard to stomach and at times clash with the positive image of Ds we are keen to promote. Both, however, are a vital part of the tightrope we walk as a charity; celebrating the many successes while drawing attention to areas where people need support or systems that are in need of improvement in a time of economic cuts and with scarce resources go around.

Kirsten M Jensen and Peter D Bulova highlight one such harsh reality in their book, Managing the Care of Adults with Down’s Syndrome.

“The development of dementia in adults with Ds becomes considerable after age 40, contributing to nearly one third of deaths. By age 60, it is estimated the 40-77 per cent of adults with Ds will have Alzheimer’s dementia.”

This statistic clearly indicates a need, for both appropriate support and services for adults with Ds and dementia, which often don’t exist, and for ongoing research into dementia. The fact that many MSPs were unaware of this shows just how important Awareness Week is in influencing change.

Perhaps palpable change can, however, be seen in the more celebratory aspects of our Awareness Week work. Oliver Hellowell, a young photographer with Ds from Somerset, has become something of a phenomenon recently. He kindly allowed us to display over 40 of his prints at Eden Court in Inverness during the month of March.

Similarly, 15-year-old Eaglesham gymnast Amy Clark has been on an upward trajectory for some time now and Down’s Syndrome Scotland were proud to nominate her for a Young Scot Award during Awareness Week. Having found her love for rhythmic gymnastics at just four, she has been competing regularly, most notably in the 2013 Special Olympics National Games in Bath where she won a gold medal and five silver medals. As a result of her success, she has been put forward for the 2015 Special Olympics in Los Angeles in July.

“Exhibiting photographer” and “gold medal winning rhythmic gymnast” sadly would not always have been spoken in the same breath as “Down’s syndrome”. In 2015, however, it’s amazing to see talented, committed and passionate individuals like Oliver and Amy being interviewed on the One Show and BBC Radio Scotland respectively as both were recently. Surely such high, public profile shows that progress is being made?

• Callum Mackinnon is PR, marketing and communications officer at Down’s Syndrome Scotland www.dsscotland.org.uk