Steve Palmer's blog about his son Stanley - who has Down's Syndrome - & the extended family. All about Down Syndrome and learning disability.

Friday, 20 April 2018

'That's my boss'. A powerful moment

'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 and Sarah Merriman at the book launch 
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 was 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.

The book, the audiobook, the podcast & the newsletter

Down's with the kids - The book / Audiobook / The podcast Listen to the podcast on Spotify Subscribe to a weekly quirky learning d...