Friday, 20 April 2018

'That's my boss'. A powerful moment

Andy and Sarah Merriman at the book launch 
'That's my boss'. The words of Sarah Merriman, who has a job in a Central London hotel, commutes to work on her own, has a boyfriend and oh yes, has Down's Syndrome. 
Andy's first book about Sarah (A Minor Adjustment) was written in 1999 and now Andy, Sarah and other members of the family have written 'part two'. This one's called A Major AdjustmentThe book launch last month.

Sarah wants to work and contribute to society. I can't stop thinking of that sentence: 'That's my boss'. In sixteen years of Down's Syndrome advocacy it's the most powerful and positive thing I've heard. Too often, people like my Stan are referred to as 'heartwarming' - with the assumption that smiling and looking cute is all they need to do to have achieved something. But Andy and I want so much more for our offspring. 

Tears are not enough 

And then I blotted my copybook. I introduced myself to Sarah's boss, who's called Sandor, shook his hand and told him what a powerful moment it was that she was holding the book launch in her workplace. And then, rather less powerfully, I burst into tears in front of Sandor. And hugged him. 

But they were tears of relief. Not everyone with Down's is going to get a job or commute on their own, but they all have ambitions and aspirations. I know that Andy's very keen to point out that it's about providing opportunities; let's see what we can all do to support people to fulfil those aspirations. 

Just like Sarah has. 

Wednesday, 11 April 2018

Approaching Jesus: not heartwarming. More 'Massive emotional intelligence'

I’m nervous writing about this. Not because it’s not a great and positive story, but because of the way people have reacted and may react. Here’s what happened:



An Easter procession in Mexico saw a young man with Down’s, Juan Pablo, approach an actor playing Jesus. Juan was drawn to the actor because he was walking with head down, appearing upset. He then comforted the actor.  The news story is here

I’m nervous about talking about this because some will see Juan Pablo’s activity as being the result of his ‘mental age’ or lack of capacity to understand. Some have commented that it’s ‘heartwarming’.

But I reject all the above. My Stan would do just the same and I think it reveals something that typically-developed adults don’t always show: massive levels of emotional intelligence. Would you see someone in distress and then take it upon yourself to ignore social norms and go and comfort them? Stan does this all the time. If someone’s upset he pushes everyone else out of the room and becomes the shoulder to cry on.

So I’m making a plea for people not to jump to conclusions about why someone, packing an extra chromosome, might approach a sad-looking person and attempt to help them.

In the comments after the article people do say they find it beautiful and heartwarming but I am much more interested in the person who describes the action as 'courageous compassion'. Once again people with Down's show us that their lives are more complex than many think they are - and that's certainly my lived experience.

Thursday, 29 March 2018

Autism / Too much information. Learning disability news 29 March 2018

Autism / Too much information
The latest film in the National Autistic Society campaign: five ways to help stop an autistic person from feeling overwhelmed on public transport. Film here  #autismtmi @autism
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Down's Syndrome / Mainstream view
My son has Down’s syndrome – and he belongs in a mainstream school - Guardian #downsyndrome #downssyndrome



Rock / Stay up Late are recruiting
Remember the charity in Sussex that supports people with learning disabilities to see bands? Well, they're recruiting for a project assistant plus a coordinator. Please tell anyone who might be interested.  @StayUpLateUK  


Rett Syndrome / Hospital Passport
Helping healthcare professionals to quickly find out what someone with Rett Syndrome’s needs are so that they can assess and treat them as needed. 
Details here @reverseRett


Down's with the kids - blog / book / podcast

Wednesday, 21 March 2018

Down's Syndrome awareness day. 21 March 2048

This edition of the Down's Dad newsletter is a Down's Syndrome awareness day special, from carpool karoake to different socks to a new book out co-written by a person with Down's.  

Down's Dad update 21 March 2018 




Friday, 9 March 2018

Learning disability news: Rock on!

In this edition of Learning Disability News: Gig Buddies comes to Wales so that people with and without learning disabilities can rock on. And the autism and wheelchair-friendly barber in Yeovil. 

Down's Dad news update 9 March 2018


Monday, 19 February 2018

The Pope is groovy. Religion and Down's Syndrome

Religious leaders seem to be falling over themselves to be relaxed and groovy about Down's Syndrome. First you had the General Synod discussing testing in pregnancy. It backed a motion calling on the government to ensure that parents who have been told their unborn child has Down’s syndrome will be given 'comprehensive, unbiased information' regarding the condition.

I was asked to comment on all of this and did so on Radio 5 Live. And then, the following Saturday, Reverend Rob Marshall went on Radio 4's Thought for the Day and talked about my 5 Live interview. My main point was that, on top of the Church of England's suggestion that people get good information when they have a diagnosis, why not come and meet Stan or someone else with Down's Syndrome. 




And then the Pope got Down's with the kids. A girl with Down's got up during a regular papal service and went towards the Pontiff. Security men quickly moved in to take her back to her Mum. The Pope stopped them and told her to sit next to him. She did just that and Pope Francis continued his homily, holding her hands. 

It's reassuring to hear this mood music from religious figures. And it's not just about the - at-times - tired old debate about pro-choice / pro-life that the church is so often associated with. All of this is, hopefully, pro-information and also showing positive images of Down's Syndrome - and I'm comfortable with that. 

The book, the audiobook & the podcast

Down's with the kids - The book / Audiobook / The podcast