Not in a huff: Down's Syndrome awareness week

We're really pleased with the filming and editing that the Huffington Post have done. They've made a film about Stan; they filmed him and other members of the cheerleading group at Saracens rugby club. It was released today to coincide with World Down Syndrome Day and Down's Syndrome Awareness Week. 

Meet Stan, the teen proving Down’s Syndrome doesn’t stop you living life to the full >>>

The film-makers were careful to use words that didn't offend or patronise, like 'suffering from' Down's etc. But also the film gives a good indication, we hope of life with Stan. It can be a challenge, but it's as busy as the cheerleading session. 

"It's OK to say 'retarded'" says comedian Louis CK. And then he makes his big mistake...

Some comedians use the term ‘retarded’ and they’re currently headlocked in a battle with the R Word campaign. The latter don’t want people to use the word. But comic Louis CK says that it’s OK to employ it. He justifies it in a YouTube video - and I have to warn you that even if you’re not easily offended, this is a tough listen. (Warning: Offensive swearing)

You hear a recording of a young man with learning difficulties, who says he's upset about hearing the R Word. Louis CK responds: “I doubt that he was offended by the word. I think that somebody told him to say it.” 

Is this a persuasive argument? The older I get the less I want to see the world as 'prescriptive' - and so not everyone has to be offended by the R Word, just because someone tells them to. And Louis CK makes a case for saying that the word has been hijacked by the families and carers of people with learning disabilities. He says that people don’t mean to offend those with learning difficulties when they use ‘retard’. 

"I don't mean you"

However, the suggestion is that people with learning disabilities couldn’t possibly understand the nuances and aims of the campaign to tackle the use of the R Word. Let’s sum up what Louis CK is saying: “They wouldn’t possibly understand.” And I find that deeply offensive; it's an assumption and a mistake. Another comedian on the YouTube recording says: “He doesn’t understand what he’s saying.”

Some people don’t have the capacity to understand. But many do. And so it's offensive to those people with learning difficulties who are genuinely troubled by the use of the R Word; because they’ve worked out for themselves what they believe is and isn't offensive.

For balance; here’s the R Word’s side of the argument.

I appreciate that Louis CK's at least tried to justify himself. But I care less about his use of the R Word than his lazy assumption that it won't offend people because everyone with intellectual disabilities is the same; ie unable to have a view on this subject.  

When is society going to realise that people with learning disabilities have opinions, thoughts, aspirations, hopes and yes, feelings? 

Stan's 15: why completing the crossword became important on his birthday

Happy birthday 

I was stuck on the final clue: 'Heated to destroy bacteria'. 11 letters. About five times a year I complete the i crossword, without cheating. And here I was, about to 'complete-without-cheat', on Stan's 15th birthday. But there was no way I was going to get this fiendish clue. And then I had an out-of-body experience. 

First though, going back a decade-and-a-half ago, when Stan was a few months old, we sat by his hospital bed willing him to come back to us. Down's Mum spent the whole time egging him on to recover from two bouts of heart surgery. Breathing life into him. Willing him on. 

And, 15 years later, here I was on the Piccadilly Line, and I suddenly realised that I had to get this clue. I could do it. I could will it. And I did it. And we did it in 2002. And we're just so grateful that Stan's in our lives. Happy birthday mate. 

Podcast: Down's Syndrome and employment

This episode it's time to look at employment for people with Down's Syndrome - Getting jobs is still a huge challenge for people like my Stan (although look - he's ready!) but let's travel to North Carolina, Boston and Derbyshire to hear from people with DS who are in the workplace. Attitudes are changing and it starts, not with what barriers are in place, but with what’s possible. I've got stories about how people, who have Down's, are getting into work and becoming more accepted in society.

It's a podcast about employment and Down's Syndrome. 

Social media muscles

At the time of writing I'm looking at the picture of a baby born the other day - the baby has Down's Syndrome. I belong to a Facebook group for parents who have children with Down's. 

And a woman joined the group during her pregnancy. She's now a Down's mum having given birth to a gorgeous bundle of joy. The mum's been deluged with good luck messages and affirmations of the type you get when a typically-developing child has been born. 

It was different when Stan was born, pre-social-media. I said in my book that Stan's arrival drew in many less flowers than when his older brother was born. The whole thing was thoroughly depressing. I'm sure many people said that Stan was lovely but we didn't have access to a community that really meant it. 

One to show the heart surgeons 

How would it have been for us if social media had been around when Stan was born and when he had heart surgery? The other day a parent posted that their child was in hospital having a similar operation to the one Stan had in 2002. As this child was small and poorly, just as Stan was, I posted the photo above, encouraging her to have faith because they can all grow up. I hope it helped. 

But for us, when Stan was born we were given a VHS tape from the 1980s depicting girls with Down's wearing inappropriately frilly dresses. Yuk. And we had no social media to draw encouragement from. 

I'm just glad that new babies are being welcomed into the world in a way that all babies should be. And I'm sure it helps the family no end. 

One for the dads

I've stumbled over an audio recording I made exactly ten years ago in November 2006. I interviewed fellow fathers about being the dad to a child with a learning disability. It never went to air...until now. As one dad says: "My son's special because he's a wonderful kid not because of the technical term."

Steve talks about this on his latest podcast 

I made the recording at the launch of a report by the Foundation for People with Learning Disabilities – Recognising Fathers.  It discovered that some dads weren't given time off work for hospital appointments, some health staff ignored the dad – spoke through him, if you like - and talked only to the Mum - and the report alluded to a sense of desperation amongst some dads about how powerless and unsupported they felt. My testimony was included in the project. 

When you have a child with a learning disability – and as that child grows up it can be hard for the parents to cope. As far as men go the 2006 Recognising Fathers report was, I think, really important, because it identified that some dads do really struggle. I hope that men recognise that they’re not alone. 

Stan in the media

Broadcast media appearances 

YouTube channel 

Newspaper, magazine and online

15 December 2017 - Genie let out of the bottle by LD-friendly production - Learning Disability Today 

18 October 2017 - Letter to the i newspaper about comedians joking about learning disability

24 March 2017 - Barnet Press - Barnet dad gives candid insight into life with son with Down's Syndrome 

21 March 2017 - Meet Stan, The Teen Proving Down’s Syndrome Doesn’t Stop You Living Life To The Full - Huffington Post - with video 

5 October 2016 - The Sun - Talking about the Sally Phillips documentary 

21 March 2016 - Huffington Post - 10 Things I’ve Learned About Having A Child With Down’s Syndrome

3 November 2014 - Community Care - ‘My son’s social care support shows me another side to the system I work in’

29 October 2014 - Learning Disability Today - Time for more complex stories about people with Down’s syndrome

21 December 2013 - Daily Mirror - College entrant Rion Holcombe is a pioneer for young people with Down's Syndrome - and others will follow

29 January 2013 - Letter to the Evening Standard about the Undateables 

28 October 2009 - Letter to Independent about The Specials