A sneak peek into the secret world of social media
And how it’s saving Down’s syndrome
By Sarah Hoss
Social Media (Facebook, Twitter, blogging, Pinterest, LinkedIn etc.) – or ‘Shmedia’ as I like to call it – is saving Down’s syndrome.
That’s a very bold statement. Stay with me, and I will show you how. But first, a little personal history:I was holed up in a leaky caravan in remote west Wales when I first began searching online for information and inspiration about Down’s syndrome. I was involved in a restoration project at the time. As a family we had a temporary caravan base for work and living space. Outside I was growing my own vegetables and keeping livestock. Sounds idyllic? I found it very tough.
At that point my son was a baby and another one was on the way. For work and social contact I was accessing the web via a terrible dial-up connection that would cut out endlessly.
That early information was mainly scientific papers that had been shared online, medical infographics showing scary looking images of “typical features of Down’s”. It wasn’t a good start; I felt terribly isolated.
However, whilst searching I found a world authority on DS and eyesight based in relatively nearby Cardiff – and dropped her an email. That was the beginning of my son being part of a research programme. It was also an opportunity to communicate with Dr Maggie Woodhouse, familiar to many as the ‘eye doctor’ at Cardiff University who has not only assisted our offspring with her expertise, but has also promoted positive images of young people with DS and involved scholars from all over the world to participate in her research. Maggie has just been made an OBE for her work.
Maggie has lots of students to supervise. As part of their studies, they get to meet my son and many other young people with DS and go home with a much broader understanding of the condition and a love for the people they have helped. The new-built school of Optometry includes an enormous montage of photos of our young people in what I feel is the most positive billboard ever produced to challenge society’s perceptions of people with DS.
Dr Maggie even visited during my caravan days and is one of a small number of people offering that all-important continuity when it comes to my son’s development. It feels like Geraint and Maggie have both known each other forever.
During my son’s life, the development of the worldwide web has put parents into direct contact with the medical profession and those enlightened professionals willing to engage directly with us.
Self-organising communities of interest
But then something new happened. Us, as parents, started creating, not just reading, the expert content. And we changed it. Google “Down syndrome” now and you are more likely to land on a page showing a gorgeous child with DS modelling in a fashion catalogue as you are to land on a medical page full of upsetting statistics. Those medical pages cause a lot of upset when information is taken out of context and this also seems to mirror the sort of advice many parents receive in person.
‘50% of all children with DS have congenital heart conditions’. Well that also means 50% don’t – and those that do are often fixed in infancy. I am not aware that on the birth of a neuro-typical baby, the paediatrician warns the mother that ‘in all likelihood your child will one day develop cancer, may become obese and diabetic and may well fail to attend University’.
That sort of information is exclusively presented only to the parents of children with issues such as DS. I’m not against information, but many mums (on social media sites) have reported the appalling way in which the news of their child’s diagnosis was communicated and this can set the tone and potentially damage the mother’s relationship with her baby in those early days.
Relatives and friends also become ill informed and fearful if they find only this sort of information when they too go in search. Before we started generating our own authentic content online this narrow view of DS was all that one tended to find.
Thanks to social media, this is being challenged and the parents are doing it for themselves. Recently a delighted young couple announced the arrival of their baby via a dedicated twitter feed.
They knew their unborn had Down’s and they wanted to keep their big community of supporters updated. The story ended up in the national press. They created a hash tag (useful for following stories on Twitter) ‘Princess Batman’ – ‘So much cooler-sounding than Down’s Syndrome Baby” as the proud mum explained. Twitter was all a-flutter. I applauded this couple by sharing their story on my own social media pages – and remembered the contrast in my own experience. The delivery-room silence that met the birth of my own son nearly 14 years ago was deafening. I was the only one who seemed happy he had been born. How things have changed.
In the past, many parents of children with DS, especially living in less populated areas, found that the biggest challenge was (and arguably still is) dealing with physical and social isolation created by society’s discomfort and the practical challenges of coping with possibly a very busy child with DS.
I found it difficult; particularly in the middle years of childhood, when my child was over the cute stage and not quite yet operating well enough to cope with the norms society expects. I know I am not alone in struggling with a sometimes out-of-control, strong boy not yet aware of his own body in space, running off, grabbing people, being over-friendly and generating challenging situations that, without the support I needed, had me heading back home with him to the safety of a locked garden, locked door and a large collection of DVDs. It’s taken huge patience, research, developing my own strategies, and understanding the sensory processing issues my son was experiencing to overcome these.
And there lay the paradox. What we needed was to be visible in our community, to become part of the norm and have opportunities for my son and the rest of us to learn from each other. My son desperately needed compassionate role models and learning experiences not isolation and DVDs.
How does one teach a young person and give them the learning environment they need to get to that point where both child and society meets happily? It was during those times that I found it practically difficult to talk properly with the medical professionals I met at appointments with my son in tow. I would inevitably venture online when time allowed, looking for answers.
Our success and progress has come, after doing my ‘homework’ from careful planning of a sensory-filled life full of exercise and excitement tempered by ‘low arousal’ techniques to help my son process what is going on and maintain equilibrium. This mutual learning has helped my son become an absolute delight; at the very heart of my little family and involved in all that we do. It’s been a long time coming, but we have surrounded ourselves with positive people wishing only to raise us up.
Authorities are still struggling with social media
When my son was at primary school, Facebook came along and changed our world; not immediately, but first by helping me stay in touch with friends and feel less isolated. I set up a profile for Geraint to more easily share information with school. I thought it would be helpful, and loaded up lots of information and photos for them to access. Unfortunately it turned out Facebook was banned and his teachers at the time had no access to the Internet. Social and educational services are still struggling with their social media policies but in the future I am convinced that digital tools will be lifelines for our young people.
Douglas Carswell MP in his book ‘The end of Politics and the birth of iDemocracy’ recounts how an army of parents used to fill up his surgeries asking for help with their disabled children. One day they stopped coming. Were there no more young children with disabilities in his constituency? No – the stream of anxious parents had dried up because they had all joined Facebook and were now advising each other without the need to take their individual issues to him.
Sharing of how to deal with the authorities is a very important role that parents now undertake on an entirely ad hoc voluntary basis posting up helpful answers to all sorts of queries. We are crowd-sourcing information to the benefit of our community and self-organising and in so doing directly challenging the received wisdom that our children are ‘burdens’ on families and society. As our children take their place in society and are finally ALLOWED to make a contribution they are doing just that.
This is exactly what is happening thanks to social media. Families looking for information are not so dependent on the ‘experts’ (usually paid public servants) but are engaging and sharing knowledge and experiences with each other and in so doing creating more positive outcomes for our children.
We have found, in what feels a hostile world that seems to only ever learn about DS in the context of antenatal screening, a safe community where we can rant, explore, share, argue, help, support and give courage to each other to challenge society.
For parents not feeling engaged with the authorities and official representatives, social media is giving us all a voice, regardless of our opinions, and empowering ordinary people to speak out.
When my son was born, I was given a leaflet from the DSA and I sat there, looking at the photos of other people’s children, all smiling at me, but felt no sense of allegiance. I was so in love with my little baby; I wasn’t ready to see photos of other people’s smiley children.
I didn’t engage with the DSA for more than a decade and missed out on the valuable support I’m sure was available. It is so difficult to capture people and engage with them through a leaflet and yet most organisations still use this as their main engagement strategy.
As soon as they arrived, I had no hesitation in engaging with DS groups online. These were groups set up and administered by parents and people with DS and they reached out to me. I only had to put in the word ‘Down’ into Facebook’s search box and there they all were.
Discriminatory abortion laws
It was through one of these groups that I became aware of a parliamentary investigation chaired by Fiona Bruce MP into the current abortion laws that allows abortion of babies with DS up until full-term, something I’ve never understood. I got in touch with the MP directly and along with many other ‘DS mums’ was invited to give evidence.
Grateful for the opportunity to be heard, I felt proud that my written evidence was included in the report that went to Parliament asking for the law to be changed.
We were one of a couple of British families contacted by a Japanese journalist through shmedia and then hosted the journalist here at my house (yes, we have progressed from the caravan to a proper house).
Accompanied by an interpreter, he spent the day with my family and published our story in the Japanese version of The Times. He explained that in Japan, where the Harmony test was being introduced, there was shame associated with having a child with DS. He hoped my story would help change that. His interpreter had tears in her eyes when she met my three children and saw how they interacted. ‘You have a perfect family’ she said as they were leaving.
No triumph, no tragedy
It is thanks to these groups that I finally did make my way back to the DSA and subscribed. I then saw how much the organisation had moved on and started engaging with it properly. Shmedia brought me full circle.
On a daily basis, hundreds of families are engaging on social media in open and private groups. Ideas and campaigns will become popular for a few days – ‘trending’ as we say – such as wearing colourful socks to promote World Down Syndrome Day, or when a TV programme is shown that features a storyline involving actors with Down’s.
There are also occasional campaigns that are promoted via shmedia such as change.org – a petition service. One recent petition regards the plight of a young London school boy with Down’s who was apparently arrested for entering an open window of his school on a Bank Holiday to collect his favourite hat. Over 100,000 people have signed the petition so far asking for his criminal record to be withdrawn. In the past, this family would have felt utterly powerless. Now they have 100,000 people behind them.
I want to give you a taste of what happens in closed groups. They are the lifeblood of our community and many families engage on these pages on a daily basis. The response is often quite overwhelming. I remember nervously posting up some photos of my 13-year-old son Geraint and being so overjoyed at the response. Since then, I’ve watched these groups really grow and genuine relationships develop. Many turn to the groups for advice on medical matters, milestones, and discrimination or for moral support.
The threads can go on for many days, involving hundred of comments. I’ve watched in absolute amazement, as mums post details of their child’s progress in hospital, on occasions seeming to go to the very brink of death before heading onto the road to recovery and that child turning into a bouncing toddler.
We’ve also shared the heartbreak of families losing a child and ‘gaining wings’ and read the heartfelt posts of grieving parents. There are baby pictures, shots taken at school and in the park, family pictures, prom and even wedding pictures. These real stories, being documented on a daily basis, are saving Down’s by bearing witness to the authentic lives being shared.
It is these real lives – role-models in some cases – that is on a daily basis building a huge body of evidence showing ordinary people that having a child with Down’s is neither triumph nor tragedy.
I recently reached out to this community when dealing with a personal situation regarding how to respond to being told my son was to be excluded from an invitation to attend a family wedding. I had tried (and failed) to have this decision overturned and felt overwhelmed with sadness. Within 24 hours of posting, I was deluged with several hundreds of thoughtful and kind messages and this invaluable and heart-felt support got me through. These pages are helping families like mine, especially when we are experiencing the pain of being isolated by other people’s ignorance and fear in the ‘real world’ in a way that professional service-providers simply can’t.
Companies, organisations, and charities: (such as the DSA and DSi – Down Syndrome International) have been quick to embrace this information revolution and are also present.
Many do not allow contributors to directly post onto their pages. To have a contribution published on such a page, one has to write directly to the organisation (via a direct message on the shmedia site or via email) and wait for one of the admin team to post on your behalf. This sort of approach is common among funded organisations taking a cautionary approach to their social media engagement where they like to arbitrate the conversation and be the conductors if you like.
In general, such pages are slow to respond to comments (if at all) and tend to approach social media in a traditional, broadcasting style. However, posts that are shared on these pages attract a massive response – photos will be acknowledged (by clicking the ‘like’ button) by thousands of Facebook users, providing an enormous boost to those featured.
Bloggers and professional pages (such as Saving Down Syndrome, based in the USA; Circle 21, populated by posts from families all over the world;)tend to be more open to interaction and build a following in a conversational style.
Some are promoting a particular personality or talent such as Oliver Hellowell’s photography page; others are leveraging themselves as pundits or promoting events such as World Down Syndrome Day. The originators encourage participation in their page by writing or sharing useful information and photos, links to videos and website, blogs and so on. They derive their following from people sharing this content, which brings visitors (and the all-important following) to their pages.
There are many ‘mummy bloggers’ (sometimes dads) sharing their journeys on open pages and attracting huge following. Some become campaigning and influential such as the excellent Downs Side Up; Down’s Syndrome – Raising Awareness and Shifting Attitudes and ‘Lose the Label’ pages. These pages are great for seeing some really positive PR and reportage. They tend to be positive and upbeat, with thoughtful, personal blog-posts and photos shared in real time by the originators and their community, with a real sense of ‘journey’ and progress.
Lose the label
Lose the Label is a campaigning page that has a very simple strategy – the founder promotes person first language by putting a message onto contributed photographs of people with Down’s stating the person’s name with the message ‘I have Down syndrome. I am not Down syndrome’. This page has seen images shared and re-tweeted many thousands of times. The images are authentic and the message is clear.
Dig a little deeper and you will find private groups to join (such as Down Syndrome and Autism, Down Right Perfect, Parker’s Place, Future of Down’s and FoD Pregnancy Support). These are the truly self-organising, crowd-sourcing groups, usually private, administered by a small group of volunteers. The content here is deeply personal, with the most authentic support.
Not for the faint-hearted, debates can become passionate. These groups are full of the most riveting content. Couples with a pre-natal diagnosis or having been told they are in the high risk category following scans and blood-tests join to find out the truth about life with a child with DS, and some, better informed, go on to share their baby pictures and thank the group for reassuring them when they were making tough decisions.
Mums compare bumps and scan pictures and ask more experienced members of the community about the health profiles of their children and their quality of life. We see babies undergo extraordinary operations and medical interventions and what was a tiny sliver of humanity develop into a toddler and child full of vitality and health.
We learn about how some develop autistic spectrum disorder. There is nothing more authentic than asking the people directly. And, finally, we are hearing the voice of families whose children have had virtually no health issues at all. These groups are contributing knowledge and wisdom and in that sharing, showing a refreshing, real and considered view of life with a DS dimension.
Against the prevailing culture of pre-natal testing and the promotion of abortion, this social media revolution is saving Down’s.