I joined Twitter yesterday. I have one follower. God bless Carole Linder whoever you are. My address is Peter Carroll @Henry Normal1. I haven’t posted one tweet nor do I intend to. Sorry Carole.
The reason I joined was that someone read a tweet out to me by Ann Memmott @AnnMemmott. It said this: ‘Behind a paywall, but this Times article is shocking. The father says: “…times in the past when I’ve thought about killing myself and [his son, now 16]”. Writing this down for his son to find, in the national news, is not a sensible thing to do. At all.’
This referred to an interview in the Saturday Times magazine with my wife Angela and I about our new book, A Normal Family, which tells of our journey bringing up our autistic son, Johnny. The whole idea of a journey is you get from one place to another. Most stories involve people who don’t know everything and don’t do everything right and, through events, they emerge at the end of the story better informed and hopefully better people. A story where the characters know everything and do everything right from the start isn’t going to be that engaging. I’m certainly not gagging to see the sequel.
The other thought to bear in mind is that journalists like the extreme aspects of a story. They also know that ‘bad news sells much better than good’ so naturally they gravitate towards what they perceive as the most negative points of the story. There are more depictions of the crucifixion than the ascension of Christ even though the idea of coming back to life is surely the unique aspect of the story.
Scanning her tweets and her Facebook photos, Ann looks like an intelligent woman. I suspect she is usually a kind and thoughtful person. I find it strange, then, that such a woman would publish an opinion with minimal information, most of which she got wrong. My only experience of ‘Trolls’ is those you used to put on the end of your pencil at school in the days before there were calculators on phones, when you weren’t even allowed to use your slide rule in maths exams.
I’m sure people realise that articles in newspapers are not the absolute truthful account of an interview, and that anything reported requires context. I remember standing in Manchester city centre with Steve Coogan and read in the paper that he was in USA. I sat with Caroline Aherne in a local radio station, having a quiet cup of tea, while a DJ shouted down the microphone “it’s crazy here, we’re having a mad time”.
The media is not real life. Here’s an example. I mentioned Trolls a moment ago. Well I lied when I said it was my only experience to enhance the comic effect. I have also seen the Pixar film Trolls more times than I have brain cells left, as it’s one of Johnny’s current favourites. Now we are back with some semblance of truth.
The amount of simple facts and misinformation I’ve seen working in TV for 30 years makes me question even the speaking clock these days. With predictive text, any written communication is fraught with dangers. I emailed a friend recently to say her recent poem was efficient. After I pressed send I realised it had changed to ‘effluent’.
Previously, my experience of Twitter has been watching Steve Colbert on US late night TV rip President Trump’s tweets to shreds armed only with wit, facts and logic. I recommend the YouTube videos of Colbert’s opening monologues. Any communication system where Trump is one of the main exponents sends warning signals to me. Apart from making up words like covfefe and countries like Nambia, a little trick I’ve noticed Trump does is to say “I don’t know’” after a lie. He’ll say things like “I might be the greatest President ever…I don’t know”. I think we do.
Nevertheless, yesterday I ventured into Twitter. I was on a mission (as the Blues Brothers might say).
I’ve been watching the box set of The Newsroom by Aaron Sorkin, and I’ve become inspired to make a stand to bring a little truth and justice into the world. Let’s see how long this foolhardy and quixotic escapade lasts. So I wrote a friendly and civil reply to Ann Memmott hoping to appeal to her humanity. This was the first activity I’d ever done on Twitter, so I wasn’t sure I was doing it right, but I was doing my best. Keeping the number of words down was an interesting exercise, like honing a poem. Here it is:
Hi Ann, we talked to Johnny about what’s in our book and what’s in the news article. Johnny can’t really read newspapers. It was my wife though who mentions her thought of suicide when things were tough not myself, but it’s easy to get things wrong out of context. love henry x
I’m aware of the danger of losing the detail, like Lenny Bruce reading from his trial records. But I know Northern Soul has a readership on the upper end of the food chain, so I will persevere.
I mentioned context as the interview with The Times lasted about three hours and we discussed many aspects of our story including the joy and pride we felt for Johnny and how well he has faced his challenges. Johnny didn’t speak until around the age of two and, even now, mostly uses one-word answers. He suffers from sensory overload and can become overwhelmed easily. He wears bright red headphones when he’s out and, at 6ft 3, he is a recognisable figure in Brighton. That’s the beautiful thing about Brighton, it is so full of character and a sense of liberty for all.
I waited a few hours and receiving no reply I went up to my computer in my office upstairs and added: ‘Hi Ann, I joined twitter today to let you know Johnny is doing fine. He’s actually 20 now not 16. The interview was 3 hours long and we had no say in the edit. Usually upbeat and joyful I think Angela is very brave to be so honest. I wish you and her both a Happy Mother’s Day. h x’
That, for me, was going to be the end of it. Me? I quite like Facebook, it feels personable. Like people have chosen to connect rather than people shouting at the world metaphorically ‘out on the street’. I have 1,760 people who have pressed a button to say they like me and 1,860 who follow me. That’s 100 who follow me but don’t like me. That’s 100 stalkers.
I’ve never had any negative feedback or messages on Facebook. My son has a Facebook page, Art by Johnny, where his mum, Angela, posts photos of his paintings. Johnny loves painting and paints or draws most days. The Phoenix Art Gallery, which is the biggest gallery in Brighton, is putting on a show of more than 40 of his paintings. We are very proud of him. This was the reason we agreed to the interview to plug his show. We had our photos taken in front of his paintings and the article mentions the show, so it seemed worthwhile.
I went downstairs to find Angela, tired from a day looking after Johnny, now in tears. She’d tapped into a Google Twitter search and had read a Twitter stream started by Beth Wilson who seemed to have some parenting issues of her own she was working through. I quite liked Beth’s belligerence – ignorant though it was. Elizabeth Roderick joined in admitting she couldn’t read the entire article. Not that that would stop her commenting. She did like Johnny’s paintings though, so I let her off. Beth agreed that he’s very creative and talented. Roderick tweeted back: “I don’t understand how these parents don’t see how amazing their kids are.”
It obviously hadn’t occurred to them that we had been encouraging Johnny constantly since the age of two to engage with the world. That we’d bought him paints and crayons and canvases and paper. That his mum even brings him fresh water for his brushes half way through each painting without fail. That we’d spend a fortune on his frames. Now Johnny is a big lad and he likes to paint on big canvass so that means big frames. If I could get him into miniatures, I’d save a fortune.
Joshua H tweeted wittily “Is the book called ‘I couldn’t accept my child being autistic until I discovered how to make money from it?'”
If only poor people are allowed to write books we are only ever going to get one good novel out of anyone. One Harry Potter book, no Agatha Christie, no Stephen Fry and no Jeffrey Archer. Forget that last one, it’s starting to look attractive.
The idea of bringing skin colour into the discussion is odd. I’m from the generation of comics who rebelled against prejudice and refused to tell derogatory jokes about black people, the Irish or the Jews. A generation that refused to make homophobic jokes or employ sexual stereotypes. Our first rule at Baby Cow, the TV production company I was in charge of for more then 17 years, was that we wanted everyone in the world to laugh together at our humour.There are a couple of user guides for this. Firstly, you never make fun of people for what they ‘are’, only for what they ‘do’. So, if someone is 60 like me, you wouldn’t make fun of them being old, but you might make fun of them for telling you their age or pretending to be 60 when they are really 61.
Another guide is never to make fun of people who have no power. You can joke about Trump because he’s powerful and does idiotic things. I hate it when people make fun of the way he holds a cup. That may be a problem with his hands. Make fun of his inability to tell a convincing lie. That’s what he does, not what he can’t help. To me, the same thought processes should govern general criticism.
I think one of the reasons I got on so well with Steve Coogan and Caroline Aherne is we are all from Irish descent. My grandad came over to England back in the days when there were signs up on pubs saying ‘No blacks, No dogs, No Irish’. The Irish were even below dogs on some people’s unwanted list. So it doesn’t wash with me that somehow one person’s pain is less because of where they are from. Sorry, L (Mutant and Proud) you’ve nothing to be proud of in that comment.
Elizabeth Roderick then wrote ‘No, no ,no’.
I can see how Dave Gorman gets his ‘found poems’ so easily.
It was the person who wrote ‘some parents don’t deserve kids’ that made Angela cry, though. Like reading a couple of lines from an article in the Times Magazine gives anyone the right to sit in judgement of another’s life. A couple of lines about a thought Angela had many years ago born out of love and desperation trying to cope. Not Angela as she is now. It said nothing of the fact that Angela had been up since 4 o’clock because Johnny sometimes can’t sleep, and she ensures he’s OK. It said nothing of the fact she has spent the past 20 years trying to anticipate and deal with any problem while lovingly encouraging and empowering a reluctant Johnny to cope with the harsh modern world.
Tom Cruise’s character at the start of Rain Man is a jerk. By the end, he has learnt something. Imagine someone tweeting that the character at the end of the film didn’t deserve to have a brother?
This is how the conversation was reported in The Times. You cram 20 years of motherhood into these scant lines and decide if Angela deserves to be a parent if you feel you’re qualified. I’m not qualified to condemn Angela, or any other mother.
Pell says there have been “times in the past when I’ve thought about killing myself and Johnny. I’ve driven along the seafront with him and thought, for a split second, about turning the wheel and heading straight over the cliff”. It’s a taboo thing to admit, and brave, too. She explains: “I feel like I’m his translator. In the early days I worried that one day I wouldn’t be around for Johnny. Nobody knows him as well as I do. Nobody, apart from Henry, loves him as much as I do. Sometimes ending it, all felt like the easiest …” Solution?
So I wrote to each and every one on the Twitter feed.
Hi, Johnny has an art exhibition at Phoenix Gallery Brighton in April. If you let me know when you are going, I’ll come along and chat. Angela and I love our son and have brought out a book of his art and a joyful book about him, the money is going to charity. Henry x
I thought if I gave them the opportunity to talk to me in person, maybe I could find some humanity in them. Truth is, we were only three days after Johnny’s 20th birthday so that landmark served to remind me of how far we’d come. We went for a curry to celebrate with Angela’s mum and dad. Johnny dressed up in his new jacket and shirt looking every bit your average handsome young man almost indistinguishable in the restaurant but for his bright red ear defenders. There was a time I would never have believed he would cope with sitting and waiting for food in a restaurant. This is where I want to live my life and spend my time, here, with Angela and Johnny and our extended family.
Angela mentioned a conversation she overheard recently. Two young girls were talking and one asked “where did you meet him?” The other replied with surprise in her voice “I actually met him in real life”.
“There have been times in the past when I’ve thought about killing both myself and Johnny. I’ve driven along the seafront in my car with Johnny beside me and thought, just for a split second, about turning the wheel to the left and heading straight over the cliff. I even once found myself – after hearing about the funeral of a local autistic child – thinking, ‘I wonder if his parents are actually, on some level, relieved.’
“I have read the uproar online when the parent of a special needs child, takes not only their own, but their child’s life. I fully understand the need for the special needs community to come out and loudly voice their disgust that this has happened; of course every single person’s life is sacred and no one – no one – should take another’s life against their will. However desperate they are. But a part of me thinks I might understand a little of what could have been going through that parent’s mind. It may be that it hasn’t anything to do with not wanting the child in their life or feeling that life with an autistic child is a burden or unbearable. I might be wrong, but I think it may have everything to do with not being able to stand the fact that there will come a time when their child won’t have them around to love, support and be an advocate for them, this thought being bleak beyond measure. I wonder if it isn’t about loving their child almost too much. To me, us both going at the same time has occasionally felt like the kindest thing I could do for Johnny. The thought of him being left, at some point in the future, to fend for himself without me, seemed cruel. I don’t have these thoughts any more, and I was in two minds about even including this segment in the book. But I have the sneaking suspicion I am not alone in having had these feelings. I also have a sneaking suspicion that if parents of autistic children could see more of this honesty in the media and on TV, we wouldn’t feel so alone in having had them.”
Excerpt from A Normal Family by Henry Normal and Angela Pell (courtesy of Two Roads)
Johnny’s art book is from Manchester publisher Flapjack Press and is called Art By Johnny
I’m at HOME, Manchester on March 26 from 6.30pm if anyone wants to come and hear about the book or talk to me. For more information, click here.