Since we started our YouTube channel, I have connected with so many amazing people – some creators on YouTube, some people working in the field of advocacy or disability services, but mainly people with Down syndrome and their families. I wish we had started earlier, since before we put ourselves out there, there were many people doing just that, using social media to advocate and make more people aware.
Why didn’t we start earlier? 3 reasons, really:
Firstly, I didn’t know what I was doing and I didn’t have the time, or I didn’t think I had the time, to learn. I didn’t have Instagram or Twitter and up until a couple of years ago I wasn’t even set up with an account on YouTube! I had no reason to be on social media, I thought life was busy enough.
Secondly, we were absorbed by working with Elijah to give him a normal life. A fully inclusive education and regular activities. Life was busy and being an advocate seemed to be something that other people wanted to do. While we do have friends who have kids with Down syndrome whom we met early on, we were not going to group functions. Again, life seemed busy enough!
Thirdly, the fear of social media and putting Elijah ‘out there’ in the world – a world where trolls abounded and it would only be asking for trouble. Now I know, the reality is that there are hardly any trouble-makers and far more lovely people. So, if I knew back then what I know now, maybe we might have started sooner!
So I commented recently that of all the supportive comments from our 1000 YouTube and 4000 Instagram followers, I have only ever received one nasty comment. Their comment doesn’t deserve to be told – it wasn’t that bad, but was intended to annoy. So I sent a nice comment back thanking them for increasing our views, reported them and blocked them. Job done. It didn’t bother me and it was actually then a talking point about how I had my first negative comment! It was like I had been waiting too long and now I had earned my first Troll badge! I am confident with the processes that Instagram and others have in place, making it quite difficult for those trouble-makers to be annoying for long.
Back to the amazing people, though … so while we are aiming to inspire, educate and entertain, there are so many doing exactly the same, or some of these. I am blown away by the abilities of so many people with Down syndrome whom I have seen on their Instagram accounts – business owners, workers, dancers, models, actors, sportspeople, or just happy kids with their families. It’s great and this in itself does such a lot to advance positive understanding of the condition.
Before social media, we hardly saw people with Down syndrome. Sometimes a group of people on a day out with their care workers. Otherwise with so many being put into institutions in the bad old days, with short life expectancy, it was hardly surprising that there was something of a veil over what Down syndrome was.
I see that veil as having been lifted now and we are all using social media to do this very effectively. When you consider the small percentage still who are on it, things are going to go from good to great. It’s only a matter of time.
The other observation is the international nature of Down syndrome. This is something that I have touched on before. The condition goes across borders, just as being human does, but the bond between families around the world is so much stronger. While in an ideal world, just being human would serve as a strong bond, we kind of stuffed that up some time ago and are trying to make things good again. With Down syndrome, though, plus the connectivity of social media, we are living in the perfect age to work together for a better world future. There is a lot of work to be done, especially with developing countries like China and those in Africa, and especially in the face of genetic testing.
So, what can we do? Well, now is the time to start working on something for 2021 The Year of Down Syndrome. It’s not just for those with or close to Down syndrome, but for everyone. I’m always encouraged when I see people without Down syndrome advocating – like Madi from the Dallas Cowboys, who is putting out stories each day through October to raise awareness. We will be doing our video for her tomorrow, having been asked by Trista the Barista, a lady we met via Instagram (she’s a worker, hence the name, and a hip-hop dancer)(and she has Down syndrome). The more people who develop understanding, the faster society will repair the historical damage that exists. Great opportunities lie ahead!
Have a great day and thanks for following! If you haven’t, please click the follow button on the left and you can also sign up for my email News-e-Letter on the menu bar. Best wishes, Rob