Have you ever wondered what being cool means? If you have a teenager in the house and you are a parent, at least you probably know what ‘not cool’ is! In the absence of a dictionary – my definition is that being cool is when you do, have or are something that other people think is cool at that point in time.

So sometimes being different is cool, if it’s something that others aspire to do, have or be. Otherwise, if everyone is doing, having or being it … well, I guess there are lots of people being ‘different’, so there are lots of cool people. Until one minion declares that something else is important and then the cool-o-meter resets to zero.

In fashion, like art, you often see people who are different standing out. When there is something different or unusual about a person, it seems they have the edge. The society of the day deems what that thing is, but it’s the nature of fashion (and art) that there will always be those looking for the next trend, challenging the status quo and discarding the norms of the day. We love traditions but we have come to expect change. We embrace the new breakthrough trend and wonder why it took so long to be realised.

What’s the point? Well, a thought I have been having is about Down syndrome and the whole same/different discussion. You may know the hashtag #MoreAlikeThanDifferent – Do you push an agenda that your child is the same as everyone else, or do you shout out about the differences. Obviously, there’s a time an place for both, but I sometimes wonder.

At the start of the journey, when the world seems to be turned on its head with a Down syndrome diagnosis … Different … the advice is to just treat your beautiful baby as you would any other … Same. We expect other people to view our child as a child first … Same … with Down syndrome second … Different. For Inclusive Education, we expect our child to have access to regular schooling. Same. We expect the curriculum to be modified and appropriate adjustments to be made. Different. Workplaces create dubious reasoning to justify why they could not give someone employment, thinking they have to treat everyone the same to be fair. Same. We call that out knowing that there are many other benefits to employing someone with Down syndrome, including some different to the usual criteria. Different.

Standing out from the crowd can be a good thing. In business, having a point of difference can make your business a success. So if supporters value the difference and provide their custom, a person with Down syndrome can be successful. The more people who value that difference, who see it as a positive thing, even see the ‘overcoming the challenge’ as something cool, the more successful a person living with Down syndrome can become. People with Down syndrome and their families do have to work harder for the same things. Considering the state of the story book on Down syndrome we have inherited, certain countries are very lucky that the tide is turning. That’s in contrast to countries like Iceland and developing countries like China and many other countries around the world where the governments (and therefore many people) just don’t value people with Down syndrome the same way.

So the starting point is to change the story we are telling about what it means to have Down syndrome. We need to promote the similarities and yet sell the differences in a positive way. We can take advantage of uniqueness and transform it into something cool. We need to use social media, a very powerful game-changer putting power in the hands of the people, to change the inherited stories into our new uplifting ones. The fashion around Down syndrome is changing and rather than hiding behind closed doors, people around the world are proudly showing off their successes. The energy is shared and with all the newcomers you can feel the momentum is building.

It’s a different way of looking at it.

Now I think that’s cool.

My, that’s a long hashtag. Fairly hard to read, which is why I normally write it as #2021TheYearofDownSyndrome.

“The Year of Down Syndrome?” I can almost hear you thinking, “What on earth is that about?”

Well, in this evening’s blog, late on Friday night when I should be sleeping, allow me to explain.

Yes, we do some crazy things here on Elijah and Crumpet. That’s because it’s an outlet for creativity. We have a lot of fun, but at the heart of the channel is the desire to achieve change. Change for Elijah. Change for Down syndrome (“DS” from now on). Change in the world. That’s when it gets serious and we start advocating, not through entertainment with its ability to change opinions and expectations in a subtle way, but with more direct calls to action.

I’m sure you noticed that we have reached something of a crisis point in the history of humankind when it comes to the future of the condition of DS. I have said before that I’m no professor, so please don’t quote me on anything as it may be slightly wrong or my source may be poor, but I remember Iceland was happy to let the world know that it had no births with DS. China (still a developing country in many ways, despite it’s massive economic progress), I read doesn’t advise families about how a child with DS can lead a fulfilling, happy, productive life with the right support. They test without permission for DS and then talk about termination if DS is found. This is me just scratching the surface and it is very worrying.

Everything hinges on how society views Down syndrome. If we look at our track record – up until recently, the medical profession was giving incorrect advice about the expectations that families should have for their newborns with DS. How is that possible? It’s really because we (society) are so ignorant. There are so many examples – take the U.K., for example, where women were not allowed to vote not long ago (last century). In fact, most men weren’t allowed to vote either if you go back slightly further. Then America and others with slavery, or South Africa with apartheid. All of these issues are now looked back on with shaking heads as it’s hard to believe how ignorant we were – how wrong society had got it.

I look back at myself as the younger Rob, the Rob before Elijah, when I knew very little about DS. My mother’s uncle had a son with DS, David, so we had met him a few times when we were younger at the odd family gathering. Being a child I was a little unsure about how to interact, but I saw that he was fully accepted and loved as a part of our family. Later on, I knew that having any child was hard work and that a child with a disability would present additional challenges, but my wife and I were okay with that and we ended up joining the lucky few! But now, when I look at how I view DS completely differently, without any fear, but instead with great expectations, I feel compelled to take action in society to help the world see the light.

Being human unites all peoples around the world. We are all one human race. Over time we created nations, with borders, cultures and languages, but underneath all that we are still very close to one another. Every society has people with Down syndrome. Just like there are different genders. In fact, if you look at what differentiates us, DS is a level above gender, since it affects all genders. So if you have DS, you are first human, then you have DS, then comes your gender, then the other groupings kick in, such as nationality, religion, culture, language.

Down syndrome is therefore an extremely unifying condition. The connection I feel when speaking to someone from Japan, or Russia, or Nigeria, or America, who has a child with DS, is that we have a common bond. We have been through similar challenges and come out knowing similar things. We understand that society has got it wrong. We become friends through this shared, very personal, emotional experience. I’m not sure there is a word to define the world-wide group of people living with Down syndrome, since it’s not a nation, nor a culture. Perhaps we should consider it an e-Nation in today’s internet age. The e-Nation of Down syndrome. Now, there’s something worth considering.

#2021TheYearofDownSyndrome is a call to action. To do something more.

We have 21st March as World Down Syndrome Day. We also have October as World Down Syndrome Awareness Month. The trouble is, these events seem to be a time when those in families with DS communicate how things are not as bad as what the rest of society thinks they are. Then those key events are over and we wait for the next year and we do the same. The rest of society sometimes watches on. Now, I know a lot of people do a lot of great work advocating for change. I want to build on that, not take away from it. I myself felt like I wasn’t doing enough, so starting Elijah and Crumpet was good for me and good for Elijah. But what more could we be doing? And why should we have to do more work, when we should be persuading others to achieve change in society – bigger changes which take longer to achieve. Change which takes longer than a month. Longer than a year. So I thought, let’s set the end of 2021 as the target completion date, giving everyone over 2 full years to get something done.

I thought that surely someone would have already grabbed 2021, with the obvious Trisomy 21 connection, as a significant year. To my surprise, a google search for ‘2021 Year of Down syndrome’ and ‘2021 The Year of Down syndrome’ came up with ‘no results’. What fun – the hashtag was also unused, so we coined it. #2021TheYearofDownSyndrome was now a thing. Time to share it with the world and get to work! But wait, can we do that? Well, yes, I don’t see why not. It may not be an official event as agreed at the United Nations, but in the e-nation of humans enjoying life with Down syndrome (and their families), I gave myself permission to crack on with it. I can be the authority. If others agree with the idea and get on board, we can own it, run with it and turn it into reality.

So, what happens next? Well, I wanted to write a bit of a manifesto. But then I thought that I would just get this blog done, then summarise what needs to happen: everyone should commit to achieving something big by the end of 2021. A BHAG – a Big Hairy Audacious Goal. If we break it down, we have 5 main groups, who can commit to achieve something by themselves, or they can achieve something by working on or with one of the other groups:

1. Individuals with DS and their families;
2. Families with no DS connection (supporters of DS);
3. Businesses;
4. Organisations;
5. Governments.

If these 5 groups have big aims and make big commitments, we have a big movement and we can achieve big changes in society. Who knows what that will look like? Not me. But if just a few people achieve just a few more things than they otherwise would have achieved, the idea will have served its purpose.

#2021TheYearofDownSyndrome – what’s your BHAG?

The clock is ticking.

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