‘There’s an awareness day for everything nowadays’ the rather jaded GP muttered in my direction recently, in a tone that hinted ‘leave me out of it please.’
‘It’s awareness day every day in our house’, wrote a Dad who saw little point in allocating just one day to a certain cause.
‘Awareness days do more harm than good, they highlight differences. There are deeper issues to fight for.’ stated a frustrated blogger.
Perhaps like me, you throw yourself wholeheartedly into the fundraising and information fest each year, believing that one celebratory day might hold one of the many golden, yet elusive, keys to creating lasting change? Thinking instead that, 'It's a way of bringing communities together and sharing vital support and information.'
So do we really need awareness days? What purpose do they serve?
Today, Friday the 21st March, just happens to be World Down Syndrome Day 2014 #WDSD2014. I’ve noted with an internal nod that there is no mention of the word ‘awareness’ in the title.
This event is something that is a big part of my life and is the online focus of March as a blogger, parent, writer, speaker and advocate for those with the condition. I'm run off my feet writing guest posts and making little films for charities and speaking at events. But just what are we all hoping to achieve?
Unlike some rarer conditions we all think we know what Down’s syndrome is. What it looks like at least, and most people have their set ideas of what they think it means.
But I’d argue, based on my own ignorances and incorrect assumptions about Trisomy 21 when our daughter Natty was born, that the vast majority of the population would be feeding into outdated stereotypes, even fear, that they unquestioningly hold deep within themselves. So perhaps it is 'change' we seek to create today in the following ways?
Gently educating and changing perceptions held by society
Hopefully shifting their thinking and subtly creating greater inclusion by removing fear and ignorance and busting a few myths. That might be via a powerful poster they read in 10 seconds and click through on social media, or a pleasant interview on their morning radio show or tv programme, or even a light-hearted article in their morning paper that makes them think a little deeper. It has to be something that draws them in and doesn't switch them off and this can be a tricky balance to strike.
Providing invaluable resources for parents, carers and professionals
This year the focus for WDSD14 is on accessing healthcare for individuals with Down’s syndrome. I am touched and inspired by how just one global event can motivate the creation of such a wealth of information. Charities are spurred on, parents are enthusiastically devouring information, bloggers are whipped into a frenzy of linking and sharing.
The Down’s Syndrome Association have written a new health book and website advising GPs on annual healthcare checks, a wellbeing film has been created by Down Syndrome International and articles on heart surgery, correct eye care and hearing tests have been updated. The need for easy access to facts on such important issues can never be overlooked and as a parent, I am eternally grateful for these charities who work so hard on our behalf.
Providing resources and support for those with Down’s syndrome
Individuals with Down’s syndrome everywhere will be joining together to support one another and to show the world what life for them is really like. Their voices will be heard and their achievements shared through dance, art, acting, photography and film. Charities have drives to promote employment, independence, health and friendship. And at a time when support networks worry about the hidden adult population with Down’s syndrome, membership of the DSA and DSS is offered free for them.
Bringing us together as a global community
We can help and learn from one another, find support where and when it suits us most, be it at 2am or over a morning coffee, in whichever format we prefer. This is the beauty of modern life. That might be face to face in a support group, online on a forum or Facebook group, finding information-rich websites to explore or new books to ponder. If a special day brings a nervous new parents, anyone who feels isolated or depressed into contact with a group that supports them and their family, then today has been a success.
They provide an opportunity for fundraising
No, our children are not charity cases. But the support they need costs money, the language therapies, the teaching interventions, the medical research, the advocacy campaigns, the equipment. Sadly none of it comes cheap.
Today we will be donning our funkiest socks ‘for we are all colourful and different’, sharing photos and asking for a small donation to the umbrella charity that supports us all the most, the Down's Syndrome Association. It's a bit of fun, it gets people talking, and it brings schools and communities together for a shared goal which is lovely to watch.
Springboard for challenging and rallying against more damaging deeply rooted beliefs
The topics that keep me awake at night, that those with LD are some how less valuable than someone who is not, that their lives are not worth living, that they are a burden on society, are always in the back of our minds. On this day of celebration and togetherness we must not forget that the R and M word is never acceptable. That indifference and negligence still leads to the deaths of those with LD whilst in care. This is what we can and must fight against together as our combined voices are mightier, and perhaps today is the day when our fingertips touch around the world, creating a safety net that will prevent this from happening in the future.
So, I will excitedly bob along in the online rapids this World Down Syndrome Day, frantically sharing as much of the most relevant information as I can, throwing lifelines and buoyancy aids to those behind me, gaining strength and hope as a parent from the masses who hurtle forth ahead of me, smiling, taking note of how they build their life rafts. You are free to dip in a toe, or plunge in headfirst, or simply picnic on the bank. But whatever you choose, it's an event that is hard to miss.
Latest posts by Hayley Goleniowska (see all)
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
- Hayley’s EHCP Save-Our-Sanity SOS plan - July 12, 2017
- A World Without Down’s Syndrome? Where do wego from here? - October 28, 2016