On the 21st of March, 2014 we joined forces to celebrate the 9th World Down Syndrome Day together. The charities Down's Syndrome Association and Down Syndrome International decided that the theme of the day was health, and as a way of getting everyone involved we wore our funkiest socks...
'For we are all colourful and unique.'
(That's a phrase I coined as a stock response when people ask what the sock theme is all about.)
But I was conscious of mutterings in the wings:
‘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.
‘Awareness days do more harm than good, they highlight differences? There are deeper issues to fight for.’ stated a blogger.
‘I can’t for the life of me think what the link to the odd socks theme is. I won't be joining in.’ stated a Facebook user.
Or, perhaps like me, you throw yourself wholeheartedly into the fundraising and information fest each year, believing that the celebratory day might hold one of the many golden, yet elusive, keys to creating lasting change?
So do we really need awareness days?
World Down Syndrome Day 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. But what does the global day really exist for and 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assumptions about Trisomy 21 when Natty was born, that the vast majority of the population would be feeding into outdated stereotypes, even fear, that they unquestioningly hold deep within themselves.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 through this global event in the following ways?
Gently educating and changing perceptions held by the public
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 that makes them think a little deeper. It has to be something that doesn’t make them switch off but it also has to be accurate and educational. I worry that some sources of information don't always work to this end and as parents we have to listen to trusted sources.
One film was created that every parent, midwife, teen, teacher and doctor in the land should watch. Twice. It makes my husband and I cry happy tears of agreement as we nod and remember each time we see it. It's called #DearFutureMom and it's a message from adults with Down's syndrome to prospective parents. If you watch one thing, let it be this.
Providing invaluable resources for parents, carers and professionals
This year the focus for WDSD14 was on accessing quality 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 essential information. Charities are spurred on, parents are enthusiastically devouring information, bloggers are whipped into a frenzy of linking and sharing the pick of the crop.
The Down’s Syndrome Association published a new health booklet, there’s a website advising GPs on annual healthcare checks, a global wellbeing film has been created by Down Syndrome International and articles on heart surgery, correct eye care and hearing tests were shared. The need to access information on such important issues can never be overlooked and I for one was weaving such links into everything I published on social media last Friday.
Providing resources and support for those with Down’s syndrome
Individuals with Down’s syndrome everywhere joined together to support one another and to show the world what life for them is really like. Their voices and achievements were shared through dance, art, acting, photography and film. At a time when support networks worry too 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 a format we can use. 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, one who feels isolated or depressed into contact with a group that supports them and their family member, then the day was a success.
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. 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 in the UK, the DSA. It was a testiment to the power of blogging as a team of well-known writers such as Caroline Playle and Futures Rosie and Orange Flavoured Sky shared the request far and wide across the land and so amny bloggers who were not directly part of the Down's syndrome community joined in. A special thank you to Story of Mum, Merrily Me, Thinly Spread, Kate on Thin Ice and Honest Mum for all they did to help.
Challenging dangerous deeply rooted beliefs
That those with a learning disability are some how less valuable than someone who is not, that their lives are not worth living, that they are a burden on society. That the R or M word is acceptable. That indifference and negligence can be allowed lead to the deaths of those with LD. This is what we can fight against together. Our combined voices are mightier.
And so with all that in mind I stood at my pc for 12 hours straight last Friday, sifting the creme of the information, sharing, chatting with link-minded family members and people with DS, medical professionals and teachers, swapping post and pictures linked up to our special linky, and smiling at how young and old came together to raise a £1 here and a £1 there. The result?
A whopping £6300!
A massive thank you to you all. I feel so very priviledged to have been a part of something so positive. Paul, Emily's Dad sums up everything perfectly in his post Thank You.
I for one will still probably be trying to pair my socks up this time next year, but I won't regret getting involved for a minute. And perhaps everyone will find their own way of being involved next year.
You might like to read
featuring all the highlights and useful information from the day.