‘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about Trisomy 21 when our daughter Natty was born, that the vast majority of the population would be feeding into outdated stereotypes, even fear, that they unquestioningly hold deep within themselves.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.
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
Hi Hayley.
Like you I read the negative comments; those along the likes of trivialising etc. but now we know that this campaign was actually a genius idea that went viral. It was eye catching, easy to join in and fun. And yes our young and not so young superstars with DS could join in too. It was even easy to combine wearing the socks with supporting that other televised event that was on the same day! Asking for £1 rather than larger amounts meant most people would think ‘yes, I can text that amount.’ I know my daughter got at least 13 people in the Uni bar to text in. It was easy to share the bright, attention grabbing photos etc on social media.
To me it seems like another achievement was perhaps more unexpected. We all felt part of something big. Something we were doing together with people who we met only online for a few seconds. A community was created.
If just a few people who saw the socks posts also clicked on the ‘future mum’ video or the ‘Happy’ one or saw any of the photo montages that were posted then awareness was spread by the articulate, people with DS looking anything but ‘pudding basin haircut in a care centre doing bingo, and having squash and biscuits!’
I was fortunate to hear Greg Sylvester,gymnast and now coach, speak at the launch of Paddy Power supporting Special Olympics GB yesterday. He spoke so articulately and held the audience with his humour, timing, off the cuff anecdotes and explained with clarity, oh and his fabulous accent (as he mentioned – not Birmingham!) it was clear that those in the audience, who don’t know anyone with DS, were perhaps not expecting such a natural orator.
Did the campaign spread awareness? Well, I’d say yes it did – in a really positive way because it showed people with DS living and enjoying their lives and the next time that doctor, person in the street, employer, future Mum and Dad, anyone, thinks about DS their awareness has been increased fabulously.
Do we still need to spread awareness? Of course we do. My myth busting daughter is 25 and because of the fundraising of previous generations she is living a full and purposeful life. The epitome of work and play hard. When she was born someone in the hospital found a very outdated pamphlet. Now I look at the amazing resources on the DSA website and think wow!
I’ve just looked back at the green, sub- headings of your article – and I thought tick, all achieved.
Dear Wendy, you always hit the nail on the head. I do get a little jaded by negativity over such an important day, and also at some of the misinformation that gets mixed in with the good, but yes, like you I was left feeling overwhelmed and the shared sense of purpose and the sense of hand-holding that the day brought. I am so grateful for the internet bringing families like yours into our lives, to shine the way for us, to encourage and support.
On balance, I was very proud with how WDSD14 went.
H x