A post from Otto

Otto and I have been busy on our podcast (https://ourhistorypodcast.com/ should you want a listen) and I have not posted here for a while. Not really an awful lot to say on the Ava-Jane front. She is doing well, as happy as ever and even has homework these days!! And there’s just too much to say on the political front and I don’t know where to start (Jez We Can!! Sorry!)

So I thought I would just post this beautiful speech Otto gave at his school about Down’s Syndrome. And here are a couple of pictures of the two of them. She really could not ask for a finer brother.


Down’s Syndrome

Hello and welcome, as I hope you all know we all had to do a speech on whatever we wanted from football or cars to superheroes or Xboxes- anything in the world. I chose to do mine on Down’s syndrome and how it is misunderstood.

The dictionary’s definition is that Down’s syndrome is a congenital disorder arising from a chromosome defect (basically that’s where the 21st chromosome is in a group of three instead of a pair.) causing intellectual impairment and physical abnormalities including short stature and a broad facial profile. It arises from a defect from chromosome involving chromosome 21, usually an extra copy- trisomy 21 (basically what I said earlier).

That may of got a bit sciencey so to cut it down into non-dictionarified language: Down’s syndrome is a learning disability and not an illness or a disease as many people can think also it’s not overall a bad thing. In fact, I personally think that people with Down’s syndrome are typically happier than people without as I’ve never met a grumpy person with Down’s syndrome. Ah- yes, what Down’s syndrome is. It’s a learning disability as I said earlier but that doesn’t mean people with Down’s syndrome aren’t particularly clever but just that they may take longer to learn certain things- for example, my sister has Down’s syndrome and at three she was just on her way to learning to walk but unfortunately she had a stroke about a year later.

The way Down’s syndrome was discovered was by a Victorian doctor: John-Langdon-Down who coincidently had a grandson many years later who was diagnosed with the disability and that is how it got the name because it’s the syndrome of Jonathan Down (the grandson) therefore Down’s syndrome.

I went on a protest march about a year back, just outside the House of Commons, for a campaign called don’t screen us out- the aim to stop doctors advising parents to abort the pregnancy if tests say that the child would have Down’s syndrome because all doctors saw was what was on paper, the statistics: in other words the dictionary definition using the words defect or disorder and not what they grew up to be like. As I said earlier my sister has Down’s syndrome and she is probably the happiest person you will ever meet. She will make you laugh and smile like never before- but now the health minister (Jeremy Hunt) is trying to use testing to screen all unborn babies to see if they have Down Syndrome.   The test can identify lots of abnormalities, but it is just being used for Down Syndrome; it is an opt. Out able instead of opt In able test which means you used to be have to ask to take the test but now Jeremy Hunt wants to swap it around-, which will increase the abortion rate and overall decrease the population of People with Down’s syndrome in the UK. The abortion rate in Iceland for people who found out that their child would have Down’s syndrome is 100%, which really breaks my heart.   50 years ago, parents were told to leave their children in institutuions and forget about them.   By the 1980’s children with D S were included in mainstream education.   By the year 2000 there were many educated young adults who became actors, gained degrees, ran busineeses and happened to have Downs Syndrome. Imagine – in our generation the UK could eradicate anyone & everyone with Downs Syndrome.   So please agree with me when I say, don’t screen us out! We can’t let this happen in our lifetime.




4 thoughts on “A post from Otto

  1. How old is Otto? That is as heartfelt a piece of prose as I have ever read. Clear thinking and shot through with understanding and love for his family. He’s obviously a chip off the old block Luke. Good to read and very moving.

  2. What a fine speech to educate the grown ups. Every day is a school day and everyone is a teacher. Thank you Otto, I didn’t know a lot of that, both the facts and also the observations. You are absolutely right, they are always happy. Perhaps that 3rd part of the chromosome is a happy one? You should start a movement to change the name of Down’s syndrome as “happy syndrome” or perhaps not “syndrome” at all as that suggests something wrong. You’re clearly a clever chap….what do you think? Maybe it’s just a silly idea.

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