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Covid blogs

Down's Dad's pandemic blogs - Two hosted by the Local Government Information Unit and one by The Ideas Alliance:

12 May 2020: Staying up late is put on hold. Autism and learning disability during lockdown >>>

8 June 2020: A fraud in a Hawaiian shirt? >>>

17 March 2021: Jo Whiley: The Marcus Rashford of the learning disability world >>>

Coronavirus COVID-19 support for learning disabilities and autism

Mencap: Easy read advice

Advice from the National Autistic Society

Down's Syndrome Association: Easy read advice

Graphic from USA's National Down Syndrome Society

Questions and answers: From various USA Down Syndrome groups

Social Care Institute for Excellence  COVID-19: Supporting autistic people and people with learning disabilities

The hand-washing rap from the Purple All Stars 

Dame Philippa Russell blog: An older person caring for a younger family member

COVID-19 advice for social care

Guidance for Shared Lives carers and schemes

'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 Adjustment. The 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. 

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 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. 

Haircut time: known to the community

'Oh my days. Are you Stanley? I haven't seen you in years'

Stan and I were walking back home from the barber shop. A woman was berating a group of school pupils for playing football on the street. But as we arrived it all changed; one of them recognised Stan from primary school days. And we all had a lovely chat. 

Stan had just been for a haircut, where everyone knows him. We'd been on the bus, where no one knew him but by the end of the ride, two men in their early twenties were his best friends. 

And it struck me that Stan is well known in the community. I'm often approached in the supermarket by someone who was Stan's supporter for, say, a week, a few years ago. He can leave an impression with so many people. 

But it's his former primary school friend that I'm thinking about today. At that school everyone was encouraged to learn Makaton signing and everyone just knew Stanley. Other young people might not know how to react when they meet someone with a learning disability. That lad did. Because Stan had been a normal part of his primary education. 

And I like to think that Stan teaches lots of people in our community lots of things about tolerance, understanding and the joy of life, every single day. 

Autism-friendly Aladdin showing

Thanks to Learning Disability Today for hosting my blog on our visit to an autism-friendly showing of Aladdin in the summer.  'Imagine a performance where the sound of a wrapper being crunched is drowned out by lots of other noise.' 

Activism and the learning disability 'movement'. Are we any good at it? Podcast #6

In this podcast:

Soundcloud version >>>

YouTube version >>>

Are we in the learning disability movement any good at protesting? Steve talks to activist Paul Richards who has set up Gig Buddies and Stay up Late so that people with learning disabilities can have awesome nights out. He also introduces Jennifer, who has a learning disability and has strong views on activism. And he looks at the R Word campaign in the USA, which challenges use of the word Retard. It's Down's with the kids - the podcast. Music from www.bensound.com/royalty-free-music

What's the Harvey Weinstein row got to do with learning disability?

Letter to the i newspaper, 18 October 2017

Grace Dent's article on James Corden's jokes about Harvey Weinstein was forceful and will hopefully stop some comedians from doing the same. But I have a problem. My son has a learning disability and too often I hear comedians defending jokes cracked about people like my son because 'anything should be discussed by an artist'. One rule for some and one for others? What we need to do in the learning disability movement is to be more convincing in our arguments and take a leaf out of Grace Dent's book.

Bias: Stan and the super-strength lager on the 263

Are we all prejudiced? Would you engage with someone on a bus who has a learning disability or perhaps someone who has obvious alcohol issues? 

On the 263, Stan met a man who was drinking super-strength lager. It was 9.45 in the morning. Are you jumping to conclusions, reader? Was this man, probably an expert-by-experience with street homeless issues, making a scene?

Well, no. He was keeping himself-to-himself; but Stan made a beeline for him and introduced himself. Before you knew it they were captivating the passengers with one of the most bizarre and entertaining conversations I've ever heard. 

Down's Mum reckons that Stan is different to many people because he doesn't have a biased bone in his body. Because of his learning disability, he doesn't know how to be prejudiced and that can be a fantastic thing. He was just born like that...

Back to the bus. The man didn't offer Stan any of his 7.5% proof booze but he did fish in his pocket and give Stan £1. Then he showed Stan his West Ham tattoo.

The other passengers were like the person on the train reading over your shoulder.  They couldn't take their eyes off the situation. And that's a good thing for challenging bias. Because here were two people connecting and perhaps, just perhaps, breaking down a few barriers. 


See also: Unconscious bias isn't just somebody else problem; it’s also yours. By Ossie Stuart, equality / diversity consultant

What's testing for Down's Syndrome got to do with Baywatch?

In Italy last week, a young man called Valeri Katoya saved a ten-year-old girl's life. The 17-year-old is reportedly a champion swimmer. The report looks like it's been translated so you don't get much information. But Valeri did save this girl's life. 

If this had been reported it to the English-speaking press, no doubt someone wouldn't have been able to resist the urge to describe this as a heart-rendering tale. If you've read any of my stuff before you'll know I have strong views on people prescribing an act of kindness / bravery / endeavour as 'inspiring' just because they find it so. 

And this was much more than heart-warming. He saved her life. And it made me think: we don't know the circumstances of Valeri's birth but let's assume that his parents might have been told that their baby wouldn't amount to much. Let's then assume they didn't go ahead with the pregnancy. Not only would Valeri not have gone on to be a champion swimmer and a lifesaver worthy of Baywatch, but that girl may well not be with us.

The next time someone discusses testing for Down's Syndrome, perhaps chuck Valeri's story into the mix. Because sometimes the value that we bring to life, as humans, is only realised in an unexpected manner. 

Related blog: How Stan contributes to society

Not just doing us a favour: why Saracens get it

Stan goes to Saracens once a week; not to play rugby but to do cheerleading. So on the last home game of the season Stan and two other young men (who go to the club and play rugby) were asked to come and hand out hampers to the people in the boxes and to give speeches to the banqueting tables. We explained to fans what the Saracens Sport Foundation does in the community. The three young men also took the ball on the pitch before the game kicked off. 

Keeping the teams waiting 

So I got to say the same thing to fans eight times and on each occasion I honed it. By the end I was putting together something more-or-less coherent and it goes like this:

Not just doing us a favour

I sometimes get irked when I see that a person with Down's or another learning disability has scored a touchdown or done something endearing like dance along to a busker. Not because they're doing it; all power to them. No - I get disappointed because the press report it as if it's some amazing event and often say it's 'heartwarming' and 'inspirational' when the person involved couldn't care less whether it is. 

So I told the Saracens fans, as they tucked into lunch, that Stan, Mark and Ollie weren't speaking to them and taking the ball on the pitch because someone was doing them a favour. They weren't the recipients of some kindly act because they suffer so much in their lives. That's an old-fashioned and patronising take on this kind of thing. 

It's a relationship

No. I told the rugby fans that in the same way that Saracens are putting something back into the community, Stan, Mark and Ollie are doing so likewise. It's a symbiotic relationship that I know Saracens Sport Foundation 'gets'. The fans yesterday met three young men who are great advocates for showing that people with learning disabilities have so much to contribute; by playing sport, by learning dance moves; by teaching tolerance and understanding; and by standing up and telling people about it. So they weren't there to make up the numbers in a condescending way. They were there to be part of a success story. 

See Stan, Mark and Ollie on their big day >>>

Talking to the media about your cause: a survival guide. Podcast #5

Do you wish you had the confidence to speak to the media and raise awareness for your cause? 

Listen on Soundcloud >>>

Listen on YouTube >>>

For this edition of the podcast I’m sharing some of my tips on talking to the media. I used to work at the BBC and elsewhere and also have done many interviews raising awareness about Down’s Syndrome. But you don’t need all that experience. You can do it too. I speak to a care leaver who’s done a few interviews – and a film-maker, who helps you with what to do when recording equipment’s thrust at you. Print / online / radio / TV - why shouldn't it be you telling the world your views? Down's with the kids - the blog and book, can be found here downswiththekids.blogspot.co.uk/

Music is kindly provided by www.bensound.com/royalty-free-music. Thanks for listening.

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.