After a longer than expected summer holiday, we are back! Today on this 29th February Leap Year day, it seemed like a good time to upload our first video of the year and say ‘Happy New Year’. We had tried to make an earlier video, but it was night time and too windy, so we decided to try again.
This summer has been very hot again and everyone around the world has seen the Australian bush fires, which we were luckily not impacted by. The school summer holidays ran until late Jan and it was quite nice having a break from the demands of social media. I only reposted the drawings from Andy Marshall (illustrator for Motivate Man, our upcoming kids book). You can follow him on Instagram@AndyCMarshall
The Kickstarter campaign ended in December with us nearly reaching $3,000 (Australian) which, when you take out printing and posting costs, pays for about half of the project costs, so that’s a big win. We learned a lot and it was fun, so we ticked a big box.
Andy was impacted by the fires and his other work, but he has been taking his time and doing a great job creating wonderful images for the book which I could not have imagined, so while I doubt we will have the book ready for 21st March, which is World Down Syndrome Awareness Day, that’s okay. We will end up with great first book.
The other fun thing I did over the break was to take part in my second podcast. I had done my first with Andy Marshall (you can find that interview here at Fork in the Road). Despite being a bit nervous as you feel like you don’t have the control of being able to edit out anything that isn’t perfect, unlike when creating films, it worked really well. I was then approached by Rich Bolus from The Dad Mindset, having been introduced by a mutual friend. I agreed to do a podcast with him and was really happy with the result. You can find that here. He also has a great interview with Maggie Dent, a well-known parenting author and educator, so I feel honoured to be able to contribute and feature alongside her!
So we haven’t been doing nothing, of course! Who could do nothing when you have work, 2 kids, a garden and house to look after? Elijah has started Year 5, which will be his first full year at his new school. As we mention on the video we have just produced, he has started learning Spanish, so I am learning it as well to help him. I’m quite enthused to be adding another language and to know that Elijah will end up being able to speak many words and phrases in both Spanish and Japanese.
When we did a Social Role Valorisation course with Darcy Elks many years ago, I wrote that I wanted Elijah to become a linguist. While that seemed like a bit of a dream wish at the time, it has become a reality, which couldn’t make me happier. On that note, I hope you have a great week and, as Elijah teaches Crumpet in this week’s video, I’ll say goodbye in Spanish – ‘Adios!’
Please feel free to leave a comment and I’d appreciate if you would pass on the details of this blog to anyone you think might enjoy or benefit from it. Thank you 🙂 All the best, Rob.
Yes, Elijah is flying! As we reach the halfway mark of our Kickstarter kids book project, ‘Motivate Man’, we have raised nearly $3,000! We now have 36 backers from around the world and 200 books going out.
We may also have a funding opportunity which will help us with our future projects, which is very exciting. Once we see how the sales progress on Amazon, we can then calculate what we might need for the next books in our series.
In other promotional activity, Elijah just answered some questions for an Instagram account, which will be published soon. It’s not a big account, but we all have to start somewhere and these collaborations are what helps us to grow. You have to persevere and keep chipping away at it. Then one day you realise you have grown to thousands of followers!
Did you know that we are now on Pinterest? Someone said that Pinterest was popular – so I am trying it out. Please look us up if you are on there.
Finally, we have announced DOUBLE FREE book draw entries for every dollar you pledge, for the next 10 backers only (from backer #37 to #46). That means if you pledge $100 you will get 200 chances to win 25 FREE BOOKS (Motivate Man) for a school or library of your choice! So hurry on over – the link is at the top – click ‘KICKSTARTER’.
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.
Dear Blog, Sorry for not posting for a while. I’ve been a wee bit busy! When I was explaining to Elijah about the campaign, talking about the launch, he said, “What, you’re going to put it in a cannon and fire it?” and laughed at his own joke – I love how he makes connections with words.
Well, it’s been quite a week, to say the least! After a weekend of preparation for the launch, including finishing off the video and tweaking the Kickstarter story page, we launched on Monday. Everything went as planned – except for only getting 4 hours of sleep. Then after dropping the kids off at school, I hit the ‘Launch Campaign’ button with a mixture of excitement and nervousness.
Before telling you how it went, 2 things: firstly, please follow our blog if you want to receive notifications about when a new blog appears; secondly, please sign up for our Email News-e-Letter at the top (benefits include entry into free book draws, communication tips, ideas, plans, secret stuff, the works!) We keep your email private, but you can always make up a new Gmail email just for this.
The lucky winner of the Launch prize draw was Instagramer @lonleavittbarker – congratulations! After our random draw (which I put on IG stories) we announced ‘lonl’ had won. I received permission to give the account name and it made my day to hear that her son’s school ‘can’t wait to have these books to share with and teach the children.’ Perfect! Well done! We now have a second draw for 25 books to go to a school when we hit $5,000. More about that on our email News-e-Letter.
Friends and family came to the party and soon the backer numbers and the amounts were rising. It was very exciting to see the funding go past 50% and I think we got to just over 60% by bedtime.
The next day saw us reach 100%, with a BIRTHDAY BANANA backer ($300) securing our initial goal of $1000. We had become a successful Kickstarter campaign. A little bit strategic as I set the initial goal low, but a win nonetheless for two reasons:
Firstly, we are now on record as having had a successful fundraising campaign on Kickstarter. That’s newsworthy – a positive news story – which I was quick to share with media organisations and social media. Anyone browsing Kickstarter will see the green funding bar, showing that we are fully funded, so that is like a tick of approval which may lead to more backers getting on board.
Secondly, once you hit your target, the money is secure. Had I put $10,000 on it and we had pledges worth $9,500, we would receive nothing and we would waste all that effort. Doing it this way we have the guarantee of receiving every dollar raised past $1,000. This was always a mission-based campaign, with the funds being used to accelerate the rollout of the planned book series. Otherwise we would just have to wait until we had sufficient online sales to do the next book.
As I write this we are sitting $3 shy of $1,500 – so that’s an average of $500 a day. Cost of books and postage comes to around $1000 for those pledges, so we have $500 contribution towards our illustration costs and stickers. At this stage, that makes me very happy, but I’m not resting on any banana leaf laurels, that’s for sure.
I distributed an A4 flyer with Elijah’s cards to his school, dentist, doctor, occupational therapist and Scouts. I had them printed on quality card, so they look the part. I think I will take it to some local libraries as well.
I am still waiting to hear about TV – staying positive that something will come through! Otherwise, if you know an organisation which could help promote, please let me know. I can email the above flyer (I will add one to the next News-e-Letter) so you can distribute if you wish to.
Well, that’s the blog task ticked off for today! On with the next 30 tasks! Luckily I have taken a week off work to concentrate on this campaign, as there has been such a lot to do. It’s just too hard to do it all in the spare time a normal week gives me at night.
If you think you would like to pledge an amount, either as a donation amount or to receive a reward of some sort (the first book pledge is $20, or 2 for $30, 5 for $50 and 15 for $100) please click here now so you don’t have another thing to remember to do! Have a great day and enjoy the weekend! Best wishes and thanks for your support! Rob
If you are not listening to Podcasts, I recommend that you have a listen! I only jumped on to learn about writing a book, self-publishing and crowdfunding. I am amazed at how much I have listened to and how much I have learned. I feel like I am at university again, or learning my role at work – it’s a good feeling to be filling up a new part of my brain and learning some new skills!
I listen on my hour-long trip to work and either listen at 1.5x speed or 2x speed, since most people on podcasts take their time. It means I cover twice as much ground 🙂 I also recommend skipping the first 3 mins usually as they are just introductions. So I found some very good channels and I have listened to about 100 hours now, condensed into 50 hours.
There’s a lot of experience out there and the interviews with successful crowdfunders all talk about preparation. They also talk about ‘going for it’ rather than waiting until you are sure that the project will be successful. You learn as you go and you sometimes have to just try it out. You may fail, but if you don’t try, you will never know and you will never learn. You have to be positive.
I tested the site with the Art project, but there was little interest. Rather than seeing this as a failure, I learned a lot. The nervousness about what will happen when I press the launch button – it’s no longer an issue! I know that I will be bombarded with people offering me all types of services which I don’t need, so I am prepared for that too. I know that you have to have a product that people really want, so I hope that our book, Motivate Man, will be attractive to many.
Friends and family, and supporters, are great – they give words of support as they are meant to! But unless that converts into orders from people not connected to me, the project will end up being much smaller than it otherwise could be. So I am working hard on growing a community who are interested in backing this and future projects. Kickstarter is not just about raising money – the project helps create interest in the cause, which is to raise awareness for Down syndrome and disability. So if we end up with a larger community, it will be a success.
I have started late on this, so the focus is to be creative and find ways to generate interest. Giveaway competitions, media leads, word of mouth, engaging on Facebook – these are all helping, but there’s not a lot of time left, as you can see from the countdown timer on the left! But it’s going to be fun and I am up for the challenge. With your support we can do this. That’s the power of positivity!
Please join our News-e-Letter for tips and additional info about the book – all those who are in the email group (which is kept private and confidential) when the Kickstarter launches will receive a link to our first (unpublished) book: Elijah and Crumpet – World Famous YouTubers, read by Elijah!
Now I am burning up time checking out groups on there, but it’s an amazing platform, so I’m looking forward to seeing what happens in that space.
The history of why we were not already on Facebook is quite simple – when I first tried to open an account with Elijah, he was too young. Then I had two faces in the picture (one being Crumpet), so it was blocked as it went against the guidelines. So the name Elijah and Crumpet was taken … by me! But blocked!!
Last weekend I researched what I needed to do. I finally worked out that I had to open an account with my name, then make a page for Elijah and Crumpet, then I could create a closed group. So that is all now complete and we have 10 likes and a few members. Yay!
So please come on over if you are on Facebook – you get a free entry into the book draw if you join the group! I have already connected with people from all around the world on there and it’s very satisfying to be able to add an encouraging comment for someone in need.
Short one today as it’s late and I have to get on with the edit for our Kickstarter video. 16 days to go until we launch (don’t you love the countdown clock I added on the left! It’s a good motivator for me!)
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
Well, at the last minute, I decided to get an old art campaign up and running again – this time as a Kickstarter campaign so that I could have a trial run and learn more about the process. Here is what I uploaded this morning. Since you can’t run two campaigns at once, I only had a limited amount of time, so the video was just taken from our old YouTube one, with slight modifications. I know it doesn’t explain the project that well, but hopefully the text does. Anyway, it reminds me that we have to make a great video for the book! Here is what I posted:
What makes this project fun and unique?
21 Paintings Around The World is unique because we need 21 people around the world to receive one of our paintings each, then send us a photo or short video of it, so that we can RE-CREATE the artwork in digital form for the public to see once again. So you can all become artists in our project! Very cool! And fun? Well, just look who’s running the show!!!
Elijah and Crumpet – World Famous YouTubers and Instagrammers
Elijah and Crumpet started their YouTube career just over a year ago. They have since grown their YouTube channel to over 1,000 subscribers and have over 4,000 followers on Instagram. There is Dad’s Blog on WordPress too. You may recognise them from TV (if you are in Australia) as they were on Channel Nine’s The Today Show recently!
Elijah loves making the shows and he often asks if we can do some filming. It’s been great for his development as we have been motivated to try new things out for the show. He has been using advanced memory techniques to learn foreign languages and his it has accelerated his reading ability. Through film-making, Elijah learns to stay on task, learn a script, play a role and act, all of which develop his mind and help provide the skills to allow him to live an independent and rewarding life. You can read more about the Elijah and Crumpet channel and see some of our 180 shows here (including this one when we met Hugh Jackman, thanks to The Today Show):
The Early Years
When Elijah was born, I (it’s me, Dad/Rob) knew very little about Down syndrome. There was a natural fear that our child would not be able to do things. Elijah has shown us that by working hard at things he can exceed expectations. It may take him longer to do what most people easily achieve, but he does this with a great sense of humour and positive spirit … well, sometimes he needs chocolate (don’t we all!)
Early on we attended a course on Social Role Valorisation (SRV). Briefly, from what I remember still, the main concept behind SRV is that we have to show our children in a positive light in society. We do this through roles. Society values certain roles, so if you have a job, you are valued as an employee or worker; if you can speak a foreign language, you are considered a clever linguist; or if you can play an instrument, you are a musician. Through his art, Elijah is seen as an emerging artist, so he has yet another valued role. He is able to learn the techniques required to paint with acrylic and through social media we can celebrate this with the world. The world therefore learns to see people living with disability in a more positive way.
21 Paintings Around The World – How the #NoSmallArtistidea came about
We love doing CRAZY things on our show. We think outside the box and aim to do things which have not been done before. It’s all about being memorable and giving viewers a ‘WOW!’ moment which stays with them.
We started with the #NoSmallArtist hashtag because we wanted to inspire and motivate both kids and adults to get painting! We were already part of the #NoSmallCreator YouTube group for creators just starting out. The ability to create art is in all of us and, fortunately, there are many styles and techniques which cater for all levels. Abstract art is the most obvious one which allows absolute beginners to produce something meaningful. Art is as much the thought process as the physical painting, which lends itself to beginners. We just have to get started, which is a barrier to many. Hopefully seeing Elijah and Crumpet getting stuck into the creative process encourages others to do the same.
The idea for this 21 Paintings project came up because we wanted to link up with families connected to Down syndrome around the world. (21 is significant because the medical name for Down syndrome is Trisomy 21, since there is a third copy of the 21st chromosome.) The only problem was that back then our channel was quite small, so while there was interest, there was not enough for all 21 paintings, so we postponed the project. (The video above was actually adapted from one of our original videos!)
Below is ‘4 Corners of the World’, which is a smaller version of the 21 Paintings project. This was also put on hold until we had more viewers. It shows the concept well, though. We position the canvases together and then Elijah paints on them, as one complete painting. We then split up the artwork into the 4 pieces and send these to participants around the world.
When they receive the painting, they take photos or make a short video (on their phone or camera) about the painting’s new home. They can add something about themselves as well, if they like, or about the town they live in. This gets sent back to us and we splice all 4 videos back together to make a digital piece of art. Art which will never physically be together ever again (most probably!), but which exists as a public piece of art forever. The owners feel a bond with the other 3 owners, so it’s a pretty cool concept.
When we started work on our Elijah and Crumpet Children’s Book (which is itself a Kickstarter campaign starting on 28th October – please make sure you visit then!), we considered self-publishing and crowdfunding. After learning about Kickstarter, we started setting up the campaign for the book.
Then just last night (3rd October), I remembered the unfinished 21 Paintings project. From being a novice creator on YouTube I knew that just getting stuck in and starting something, you learn the fastest. So I thought it would be a good idea to run this campaign first, for just 21 days during World Down Syndrome Awareness Month, so that I could promote it and also gather attention for the book project. “Create a mailing list”, as all the podcasts seem to advise! So although I am not giving myself 3 months to prepare, it will be fun and it will be something of a talking point if I can get the campaign prepared in just over a day! Here goes!
The cost of sending the paintings around the world, plus the materials, is about $100 Australian, so we are asking backers for that amount if they want to receive the painting. Otherwise, smaller contributions will go towards painting equipment and materials for this and future projects.
When we first asked our viewers who was interested in the project, we learned that a few people could not afford to pay for the postage (such as one lady in India who said that they needed their spare cash to afford medical expenses for their child). So to include them, we had the idea of having sponsorships … hence the ART SPONSOR rewards which will allow us to donate paintings to 4 backers. These backers will be chosen from people who respond and ask to be put on the mailing list for the project. Dad’s choice is final and it will depend on factors such as the country, how many other people we have in that same country, plus the story of the participant. If we do not get enough, we will offer it to those people who have contributed as MATERIAL(s) SUPPORTERS, choosing someone at random.
Thank you for supporting us. Let’s do this!
With best wishes from Elijah, Crumpet … and DAD 🙂
Risks and challenges
All the materials have been purchased. The only risk is that we get sick and can’t do the work. Otherwise we have a track record of getting things done, as you can see from our YouTube channel growth. If for some reason we don’t get the funding, we will relaunch at a later date.
Welcome back! Today’s blog is a very quick one, as I have been away with work and we have a big project underway.
Firstly, welcome to our new visitors and also if you have clicked FOLLOW, make sure you sign up to our New-e-Letter as well. This email is specifically for information about our Kickstarter Crowdfunding book launch on 28th October (link at top of page for more information).
Last night I was returning home from being away with my day job and I remembered the art project that Elijah and Crumpet had started last summer. #NoSmallArtist was created to focus on the ability of people to create art, even as a beginner. For Elijah this was another opportunity to develop and learn a new skill. Being an artist is also socially valued, so in the spirit of SRV (Social Role Valorisation) (we attended a course by Darcy Elks when Elijah was very young) this creates an impact.
One of our projects working with acrylic paint on canvas was ’21 Paintings Around The World’. We started, made some YouTube videos, then it rained, we got busier and the usual winter colds got in the way. Now it is warming up, though, we can get it going again. Plus, my thought was that I would make it a Kickstarter Crowdfunding campaign to get backers who already like this kind of thing.
Now that I have learned a lot about Kickstarter, I felt confident giving it a go before we launch our main book campaign. The reason for this is similar to my experience with YouTube – you have to start, even if you don’t know what you are doing. You then learn so much through the process, refine things and you often get a result. That’s the entrepeneurial spirit which get things done … quickly! I know that I will learn things from it which will stand me in good stead for our book launch. Considering the book launch will have media attention (if all goes to plan), it is crucial that I make any mistakes before this.
So last night I re-edited the video and tonight I will sort out the reward levels and write the text, insert some photos and have the campaign ready to go in a record 1 day. Then Kickstarter will take several days to review and we will launch asap. Watch this space! All the best, Rob
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:
Individuals with DS and their families;
Families with no DS connection (supporters of DS);
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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