I’ve Got My Uses

I’ve had to find something to do to fill the time I previously spent on Twitter. Furthermore, I had my six month bladder check up on Monday and everything was fine. No need for another check up until this time next year. Having had a cancer filled year from July 2018, this news opens up some head space that has been occupied with dark images and catheter nightmares for the past 12 months. Coming back from the hospital on Monday, I made the spontaneous decision to hop off the bus in Harefield and have a pub lunch. The pub had a special Monday offer of buy one cocktail, get one free. 4 pina coladas later and having absorbed the unexpected countryside scenery, I decided to make Steven a new book for Christmas.

Back in 1997, I made Steven a pop stars dictionary. Pre internet, it involved cutting photos out of Smash Hits and Q, packs of coloured cards from Woolworths and several Pritt Sticks. I didn’t get awarded a Blue Peter badge for nothing. A book of its time. It has been a huge success. 22 years later and Steven still reads it. It’s very dog eared. Some of the pictures have become unstuck. We lost Shania Twain around 2001 and Bill Withers has some chocolate from a Whispa stuck on his jumper. There’s also a random appendix of photos I added in 1999. In non alphabetical order they include: Ricky Martin, Alice Deejay and Lou Bega. Steven accepted these surprise additions to the old favourites and the compendium has sat on his bookshelf next to his Gladiators annuals for the past 20+ years.

Doing a new dictionary in a post Smash Hits and Woolworths age should be much easier. I can download all the photos and create an online book. One of the support workers compiled a fabulous book of our holiday in Torquay in 2015 and it looks so much better than my Heath Robinson efforts from the nineties. He will be a big help.

On Monday evening, I downloaded 863 photos. From Ace of Base to Yazz. Although I downloaded them in meticulous alphabetical order, 74 of them rebeliously landed in my download folder in a pesky random order. The file starts with Mamas & the Papas, Shabba Ranks, Chesney Hawkes and 71 others before it settles down to the As, Bs and Cs.

I ran this by Des and like all the support workers, he was incredibly enthusiastic about the project. He’d already instructed me to take life easier in the light of my good cancer news and offered to take over the whole job – “Email me the whole folder Mr Neary and I’ll sort it into alphabetical order”.

“But you won’t know the names of all the 863 artists Des”.

“Yes I will. I can look up the few that I don’t know”.

I didn’t want to appear disrespectful but I suspected there would likely be at least half that he would have no idea about. He’s the same age as Steven but not as adept at spotting the difference between Billy Ocean and Billy Idol. A piece of cake for Steven but a mountain of marzipan for Des. I decided to prove my point.

“Okay. Here’s the random bunch at the start of the file. Who are they?”

“Oh that’s easy. That’s Shaggy. And yes, George Michael. And that’s an old one…It’s The Spice Girls….”

I could see the marzipan mountain looming.

“Ah. Who’s that? I might have to think about that one….”

He was stalling.

“It’s Del Shannon Des. He sang Runaway. Run, run, run, runaway. Steven often sings it when he’s having a shit. And the next photo is Sparks…”

Smugness kicked in. It’s a disagreeable trait. But a few months ago I thought I was dying. I wrote a comprehensive Death Plan where these sort of tasks were carefully detailed for whoever picked up the “compiling a photo album” baton. But I’m alive again. And I want the fun of deciding where to file Dr Alban in the D section.

I’ve still got my uses.

9b38b58d5cc4b2faf81defecacfcad5d

Advertisements

Trigger Happy

“You’ve just triggered me. Thanks a bloody million. 😡”.

That was a reply I got to a tweet I posted a few weeks ago. In the space of three weeks, I received three similar messages. From three different people. Three people being triggered by three completely different posts. The upshot of all three was that I ended up feeling bad, guilty. I couldn’t possibly have known that an innocent post would activate a past traumatic feeling in the reader but that didn’t prevent the sense of responsibility I felt for triggering their unsettled state. One was a throwaway comment about The Boomtown Rats but it took the reader back to a horrible thing that happened in 1979.

Yesterday, Facebook memories reminded me of a post from 1 year ago – “Off to Uxbridge to buy some sun lotion and trunks for my holiday”. Today, I woke up to another Facebook reminder. It was a selfie I took in the gym a year ago. After 9 months of solid training, I looked the dogs bollocks. Both reminders triggered off powerful memories of discovering I had cancer. It was during the holiday in Torquay that I fell ill and led me to having the scan upon my return. The photo drilled home the illusion that whilst I looked great on the outside, unbeknownst to me, I had a large tumour behind the muscle and I was three months away from a heart attack. Facebook didn’t know any of this and I’m not going to call out Mr Zuckerberg for triggering those painful memories.

The more years we live, the more we walk the tightrope of being inadvertently triggered. Yesterday I got back from Steven’s and could hear a sawing sound outside my living room window. The man from the flat downstairs was sawing a large crate, whilst his 5 year old son sat in his paddling pool, watching his father admirably. For 10 minutes I was catapulted back to 1965 and sitting in my garden watching my Dad build me a go cart. It wasn’t a sad or painful triggering but it carried a degree of melancholy and it was certainly an unexpected moment of time travel. I definitely had no intention of admonishing the man downstairs for this tearful trip down memory lane.

Syncronistically, whilst typing this post, The Real Thing’s “You To Me Are Everything” popped up on Spotify. Bang. I’m back in 1976 and looking at the wreaths in the front garden as we wait for the hearses to drive us to my Mum’s funeral. By the second chorus, I leap to 1997 and our first caravan holiday with Steven where Darren, one of the redcoats sings that song in his solo slot during the “Homegrown Talent” show. Tears and smiles in equal measure. I didn’t choose to hear that song. It just suddenly appeared.

Steven got triggered last week and got terribly upset. All his anxieties about being taken away from his home again leapt to the surface in a nanosecond. He was having a new wardrobe delivered. The estimated time of delivery could have been as early as 7am, so I asked the support workers to remove the old wardrobe the afternoon before and lay out all his clothes on my bed. When I told him about this plan, his immediate response was, “Steven Neary’s not going on a long break to M House? Staying in the Cowley house forever and ever?” This went on for nearly an hour. Deep distress and anxiety. All triggered by the arrival of a new wardrobe. Who am I going to shout at for causing that trigger? The Cotswold Furniture Company? Me? Steven for allowing himself to be triggered? Any blame is nonsense.

Being triggered is the stuff of life. It happens when we least expect it and nobody is responsible for it happening. It just happens. On social media, where every innocent conversation can be watched by 100s of people, we cannot be responsible for how those 100s of people are going to be affected by what they read. Obviously we can try to be sensitive but as shown by the examples above, one person’s anecdote or conversation could quite easily be another person’s trigger. We mustn’t use our triggeredness to point score or win an argument. We have to own our emotional response to a trigger.

An odd thing often happens in a counselling room. None of my clients know that I quit Twitter last week but this week I’ve had three clients explore their relationship with social media. The good and the bad. Three different generations so each with very different experiences. I didn’t prompt these discussions. So who triggered who? It’s probably one of those moments that Terrence Mann described as “the cosmic tumblers clicked into place”.

If this blog post has triggered anyone, I offer my sympathy but at the end of the day, that’s life chum. Please don’t send me an angry face emoji.

21st Century Cowley Boys (c Marc Bolan)

Oh boy. In our ongoing mission to drag Steven into the 21st century in respect of his music access, the other week I set up 26 Spotify playlists. Knowing how much he loves a compilation tape/CD, I did 26 lists, one song per artist, categorised alphabetically like his CD collection in his living room.

I think over the past two weeks, Steven has been through each playlist twice. In that time he’s already  committed them to memory. Each artist, each song, in order. Last night he decided to test me out on each list. Without recourse to his tablet to remind myself. It took over two hours to name every artist and song. I almost became a bit Basil Fawlty at one point in my delirium – “I could spend the rest of my life having this conversation”. It took all my concentration because knowing Steven, one mistake and we’d have to go back to the start and I didn’t want to get all the way to W and forget The Weather Girls and have to go back all the way to Ace of Base.

Anyway, in case you ever bump into Steven in Jay’s sweet shop buying a Twix, you’d better learn the following off by heart. A word of advice: put your Twix in a cool bag because it is likely to melt before you get to R.

Ace of Base. Abba. A1. Aqua. Amen Corner. Arthur Brown. Alice Deejay. Aztec Camera. Anneka. ABC. Adam & the Ants. Andrea Bocelli. Atomic Kitten. Archie Bell & The Drells. Apache Indian. Adele. Alicia Keys. Ant & Dec. Alvin Stardust. Aswad. All Saints. Altered Images. Annie Lennox. A-ha. The Animals. Amy Winehouse. Anastacia. Another Level. Allison Moyet. Aerosmith. Agnetha Faltskog. The Archies. Arrow. Andy Williams. Adam Rickitt.

The Beautiful South. Baccara. Billy Ocean. Billy Bragg. Billy Idol. Billy Paul. Billy Joel. Bewitched. The Beatles. Baltimora. The Bee Gees. The Beach Boys. Barry White. Barry Blue. Beats International. Belinda Carlisle. Boney M. Barry Manilow. Big Mountain. Blue. Black. Blur. Black Box. Black Lace. Bob Marley & the Wailers. Bob & Marcia. Big Fun. Blondie. The Bluebells. The Bluetones. Bill Haley & the Comets. Buddy Holly. The Buzzcocks. The Boomtown Rats. Bryan Ferry. Bryan Adams. Bucks Fizz. Britney Spears. The Black Eyed Peas. The Backstreet Boys. Boyzone. The Bloodhound Gang. Busted. Boy George. Bow Wow Wow. Bruce Springsteen. Bruce Forsyth. Bastille. Bad Manners. Ben E King. Benny Anderson. Bananarama. Bernard Cribbens. Bon Jovi. The Barracudas. Bros. Brother Beyond. The Bangles. The Buggles. Bay City Rollers. Blancmange. Basement Jaxx. Bonnie Tyler. Barbara Dickson. The Boo Radleys. Babybird. Baby D. Babylon Zoo. The Byrds. Blazing Squad. Blu Cantrell. Bill Withers. Beyonce.  Bronski Beat.

The Coral. Chicory Tip. Cyndi Lauper. Culture Club. Culture Beat. Chic. Coldplay. Craig Mclachlan. Craig David.  Chumbawumba. Chubby Checker. The Clash. Cher. Cornershop. The Christians. Coolio. Carly Simon. The Commodores. The Communards. Cilla Black. Cockney Rebel. Connie Francis. CeCe Penniston. CeLo Green. The Cardigans. Catatonia. Cutting Crew. Crowded House. Celine Dion. Curiosity Killed The Cat. Cliff Richard. Chaka Khan. Chaka Demus & Pliers. Charlene. The Cure. Cheryl Cole. Carl Douglas. The Corrs. Coast to Coast.

David Bowie. Darts. Dead or Alive. Divine. The Divine Comedy. Dana International. David Cassidy. David Essex. David Grey. Dave Dee Dozy Beaky Mitch & Tich. Damian. Depeche Mode. Dusty Springfield. Del Shannon. Danny Wilson. Donna Summer. Dodgy. DJ Sammy. DJ Casper. DJ Otzi. Dr Alban. Dion. Dido. Darius. D Ream. Disco Tex & the Sexolettes. Diana Ross. Dexys Midnight Runners. Duran Duran. Dizee Rascal. Dawn. Des O’Connor. The Diamonds. Desmond Decker. Daniel Bedingfield. Dire Straits. Dan Hartman. Dave & Ansil Collins. Duffy. Dolly Parton. Diana King. Deep Blue Something.

Enrique Iglesias. Eminem. Erasure. Elvis Costello. Elvis Presley. East 17. Eamon. The Eurythmics. Eddie & the Hot Rods. Estelle. Everything But The Girl. Elton John. Eric Clapton. Eric Carmen. Eric Prydz. Eighth Wonder. Eternal. Europe. ELO. Enya. The Everly Brothers. Edwin Starr. Elaine Page. Eiffel 65. Edith Piaf. Electro Velvet. Electronic. Echo & the Bunnymen. Eddie Grant. Englebert Humperdinck. Eels. Edison Lighthouse. Eliza Doolittle. Earth Wind & Fire.

The Farm. The Feeling. Frankie Goes to Hollywood. Freda Payne. The Four Seasons. The Four Tops. 4 Non Blondes. Fine Young Cannibals. Frank Sinatra. Franz Ferdinand. The Fratellis. Fox. The Fugees. Fats Domino. Fatboy Slim. Fatman Scoop. Five. The Flying Picketts. Frankie Ford & the Checkmates. Freddie Mercury. Fairground Attraction. Fern Kinney. Fergal Sharkey. Frankie Laine. The Foundations. Florence & the Machine.

George Michael. George Ezra. George McCrae. Gerri Halliwell. G4. Gary Glitter. Gary Barlow. Gary Puckett & the Union Gap. Gary Numan. Gary Jules.  Gareth Gates. Gala. The Gap Band. Groove Armada. Gloria Gaynor. Girls Aloud. Gabrielle. Gene Pitney. Gerry & the Pacemakers. Gypsy Kings. Gerry Rafferty. Grandmaster Flash. Godley & Creme. Gnarls Barkley.

The Human League. The Housemartins. Happy Mondays. Haddaway. Hue & Cry. Hello. Hamilton Bohannen. Haircut 100. Holly Johnson. Holly Valance. Harry Neilson. Harold Melvin & the Bluenotes. Heaven 17. Heatwave. Hear ‘n Say. Hansen. Hot Chocolate. The Hollies. Hayzee Fantazee. Herman’s Hermits. House of Pain. Huey Lewis & the News. Howard Jones.

Imagination. Inner Circle. Ian Dury & the Blockheads. Inspiral Carpets. Irene Cara. The Isley Brothers.

The Jam. James. James Blunt. James Brown. James Arthur. Jimmy Jones. Jimmy Nail. Jimmy Ruffin. Jimmy Sommerville. John Lennon. John Paul Young. Joe Jackson. Joe Tex. Just Jack. Johnny Nash. Johnny Cash. Johnny Tillotson. Johnny Bristol.  Johnny Hates Jazz. Jessie J. Jesse Green. Joy Division. Junior Walker & the All Stars. Junior Senior. Jason Donavon. Jesus Loves You. Jason Moraz. Justin Timberlake. Jennifer Rush. JLS. Jamelia. Joan Armatrading. Jonah Lewie. Jamiroquai. Jerry Lee Lewis. Jeff Beck.

Keane. Kaiser Chiefs. The Killers. KC & the Sunshine Band. Kylie Minogue. King. Kenny. Kim Wilde. Kid Creole & the Coconuts. The Kinks. Kate Bush. Kevin Lytttle. Keith West. Kirsty Mccoll. Katrina & the Waves. The KLF. Kool & the Gang. Kelly Marie. Kelly Rowland. Ken Boothe. Kenny Loggins. The Kids From Fame. Kiki Dee. Katy Perry.

The Lightning Seeds. The Lighthouse Family. Lulu. Leona Lewis. Lou Reed. Lolly. Let Loose. The Love Affair. Level 42. Lady Gaga. Lionel Ritchie. Laurence Fox. The Lambrettas. Luciano Pavarotti. Liza Minnelli. Little Mix. Leo Sayer. The Las. Lemar. Living In A Box. Lily Allen. The Lonely Island. Living Joy. Labi Siffre. Leanne Rimes. Louis Armstrong. Lou Bega. LFO. Los Lobo. Lisa Stansfield. Liberty X.

Madness. Madonna. Mark Morrison. Mark Owen. Martha & the Muffins. The Motors. Mud. M. Michael Jackson. Mike & the Mechanics. M People. Millie Small. Mama Cass. Manic Street Preachers. Mika. The Monkees. Montell Jordon. Mel C. Mel B. The Mamas & the Papas. Moloko. Men Without Hats. Moby. Modjo. Meatloaf. Morrissey. Macy Grey. Malcom McLaren. Marc Almond. Marvin Gaye. McFadden & Whitehead. The Marcels. McFly. Michael Buble. Maddison Avenue. Matt Bianco. Milli Vanilli. Mott The Hoople. Massive Attack. Mousse T. The Mavericks. Maroon 5. Men At Work. Marky Mark & the Funky Bunch. The Mock Turtles. Middle Of The Road. Mel & Kim. Meghan Trainer. Marv Johnson. Mungo Jerry. Musical Youth.

New Order. Nenah Cherry. Nirvana. The Nolans. The Noisettes. Nik Kershaw. Nick Berry. New Kids On The Block. No Mercy. Nelly. Nelly Furtado. Nena. N Trance. Natalie Imbruglia. Natasha Bedingfield. Nina Simone. Neil Diamond. Nyzlopi. Nickleback. Narada Michael Walden. Norman Greenbum. 911. Nicky Thomas.

Olivia Newton John. OMD. OMC. OPM. One Direction. Olly Murs. Oasis. Outkast. Outhere Brothers. Owen Paul. Orange Juice. The Original. The O Jays. The Offspring. Odyssey. The Osmonds. Oliver Cheetham. The Ordinary Boys.

The Proclaimers. The Pet Shop Boys. The Primitives. The Police. The Passadenas. Phil Collins. Paul Young. Paul Heaton & Jacqui Abbott. Paul McCartney. Paul Simon. Paul Anka. Prince Buster. Prince. Primal Scream. The Prodigy. The Pretenders. Perry Como. Pulp. Puff Daddy. Phats & Small. Procul Harum. Phixx. Peters & Lee. Peter Andre. Plastic Bertrand. Percy Sledge. Pete Wylie. The Platters. Professor Green. Patrick Swayze. The Partridge Family. Pink. Pink Floyd. Pitbull. Positive Force. Pigbag. Petula Clark. Pharrell Williams. Pixie Lott. The Pointer Sisters. Phil Oakey. Peter Gabriel. The Pussycat Dolls.

Queen.

The Rolling Stones. Rednex. Rose Royce. Roxy Music. Racey. Robson & Jerome. Roger Miller. Right Said Fred. Robin Thicke. Roxette. REM. The Righteous Brothers. Rihanna. Robbie Williams. Rod Stewart. Rock Follies. Rick Astley. The Real Thing. Roy Orbison. The Ronettes. The Rubettes. Rachel Sweet. Rachel Stevens. Ray Charles. Ray Parker Junior. Robert Palmer. Ronan Keating. Ritchie Valens. Rizzle Kicks. Ricky Martin. Red Hot Chilli Peppers. The Rezillos. R Kelly

Scouting For Girls. The Sweet. Sophie Ellis Bextor. Sparks. The Specials. Squeeze. Space. Sugababes. Stevie Wonder. Steps. Stereophonics. Shaggy. The Seekers. The Searchers. The Spice Girls. Shabba Ranks. S Club 7. Showaddywaddy. The Shamen. Sham 69. The Sex Pistols. Savage Garden. Sonique. The Stone Roses. Sailor. Slade. Shaking Stevens. Snow Patrol. Sandie Shaw. The Smiths. Supergrass. Sting. Sinead O’Connor. Smokey Robinson & the Miracles. Simple Minds. Simply Red. The Stranglers. Sammy Davis Junior. The Style Council. Spandau Ballet. Sylvester. Shakespeare’s Sister. Simon & Garfunkel. Soft Cell. The Silhouettes. The Streets. Shalimar. Scissor Sisters. Status Quo. Suzi Quatro. The Supremes. Sister Sledge. Shania Twain. Swing Out Sister. Soul 2 Soul. Snap. Sophie B Hawkins. Sonia. Sonny & Cher. Shakira. S Express. Sarah Brightman. Seal. Scott McKenzie. Secret Affair. Stereo MCs. Shirley Bassey. Scatman John. The Small Faces. The Skids. Suggs. Sean Paul. Shola Ama. Stealers Wheel. Simon Webbe. Survivor. Spin Doctors. Snow. Sinitta. Sean Kingston.

Talking Heads. Tavares. Tears For Fears. The Thompson Twins. The Tymes. Tom Jones. Take That. Thunderclap Newman. The Tremeloes. The Troggs. The Turtles. Tina Turner. Tommy James & the Shondells. They Might Be Giants. T Tex. TLC. T’Pau. 10CC.  Travis. Tony Christie. Toyah Wilcox. Tina Arena. Tatu. Texas. The Temptations. The Three Degrees. Tracey Ullman. Tom Robinson Band. Tina Charles. The Tony Rich Project. Talk Talk. T Spoon. The Tamperer & Maya. Two Umlimited. Toni Braxton. Tammy Wynette. Toploader. 3T. Toto. Tight Fit.

UB40. Urban Cookie Collective. The Undertones. Ultravox. Ultra Nate. Ultrabeat. U2. Underworld.

The Verve. The Village People. Van Morrison. The Vengaboys. Vanessa Williams. Vic and Bob. Vanilla Ice.

Wham. Wet Wet Wet. Wings. Westlife. Wyclef  Jean. Will Young. Will Smith. The Who. Whitney Houston. Wizzard. Wheatus. Weezer. The Wanted. Wah. The Walker Brothers. The Weather Girls. Wannadies. The Whispers. Womack & Womack.

XTC

Yazz. Yazoo. Yvonne Keeley & Scott Fitzgerald. Yvonne Fair. Yvonne Elliman.

Zager & Evans. ZZ Top.

Kids’ Games

The other day a massive Twitter ruck broke out. At face value, it looked like the argument was about the infantilism of adults with learning disabilities. (I have my doubts over whether that was the pure motive for the spat but I’ll save that for another day).

A really good friend did a tweet and used the word “children”. It was clear to me from the context that she was using the word as a collective noun for our sons and daughters. It was about a blood connection. It was nothing to do with infantilism. Anyone with even the slightest acquaintance with my friend knows that she would never do something so trite.

Since Wednesday, I’ve been thinking about this issue a lot. It reminded me of Whistler’s Mother and her unrelenting preoccupation with “age appropriateness”. Lots of things set her off. Mr Bean. Dave Benson Phillips videos. Steven kissing my head as a greeting. Needing help with teeth cleaning. All these things prompted raised eyebrows and were added to a long list of things to be worked on to establish more age appropriate behaviour.

There’s some scars from that experience. I’m very careful about what I write, for fear about creating the wrong impression. I’m not sure that I’d record that we’d spent a joyous couple of hours watching an old Camberwick Green video. I’m nervous mentioning that Steven needs assistance cutting up a piece of steak. No such problem writing about things that Whistler’s Mother would approve of. Like putting out the bins. Or hanging out the washing.

Of course infantilism happens. In my experience though, it’s more likely to come from the professionals or innocent bystanders rather than family members who are with their sons and daughters everyday and are perfectly aware of their characters and capabilities.

I was still playing with my Subbuteo in my early 30s. I still do lists of my favourite songs, which I first started doing when I was 10. People may make judgments about that but my admission doesnt put my liberty under threat. That’s a potential consequence of  these facile, off the cuff accusations.

I’ve deactivated my Twitter account. I’m sick of the constant critical judgments of parents and families. Whilst the critics take the moral high ground, our children are at risk. That’s our adult, grown up children, by the way.

Anyway, rant over. Let’s have a Kid’s Game:

10 Years of National Carers Week

In March 2009, I popped into our local branch of Carers UK for something or other. (There’s always something or other with Mr Neary). I was asked if I wanted to put my name in the hat for a free holiday.

We won. And so it was, that 10 years ago today we set off for a week in the sun at Pontins Blackpool. Carers UK had taken over the camp for the week and what a motley crew we looked. You know the scene at the end of The Poseidon Adventure when the handful of survivors emerge bedraggled from the upturned ship? That was us.

article-2006049-0C9356B400000578-938_468x378

The camp was frozen in time in 1973. They had Alvin Stardust on the jukebox. In the gigantic dining hall we were served arctic roll for pudding and after a break of 30 years, we became reacquainted with mashed swede. There wasn’t the remotest possibility to request reasonable adjustments. Steven ate his spam with one hand over his ears to block out the cacophony of noise: screaming kids and Lynsey DePaul.

The mattress was green with mould. The bathroom wall caved in on the penultimate day through damp. We had to dangle the TV aerial from the lampshade in order to watch Channel 4.

On the third day, Steven fell down a pothole and twisted his ankle. The whole day in casualty and the remainder of the week bandaged up. Typically stoic, he didn’t want to miss the Royal visit when Princess Anne came to present the prizes in the knobbly knees competition. But the injury did rule out throwing some shapes to Wig Wam Bam.

At the end of the season, the camp closed down for good. Another nail in the Pontins coffin.

Facebook memories reminded me of the trip today as it’s the first day of another National Carers Week. The first two years of this blog, I wrote to commemorate the start of National Carers week. I gave up on that years ago.

A photo pinged up in the memory reminder. A sudden lump in the throat leapt up. It was a photo of Steven on the Blackpool tram as we rode to the Tower for a quick paso doble. Six months after the Blackpool trip, Whistler’s Mother decided to tango all over our life and things changed forever.

The photo of an excited, expectant Steven became the banner for the Get Steven Home campaign.

Stephen-Neary

Memories.

Working Together

I’m going to press “publish” on this piece, don my hard hat and retire to a bunker for the forseeable future.

I keep questioning what the phrase “working together” means, especially in the context of campaigning for the rights of learning disabled people. And my main question is whether the idea of working together is actually possible.

Last week I spoke at the Wow festival in Liverpool. The theme was “Justice and Campaigning” and although it wasn’t explicit, given the speakers, the context was Justice and campaigning in the field of learning disabilities. It was a great evening. Lots of passion. Oodles of sense. An overwhelming expression of humanity. To all appearances it looked like we were all coming together in a common goal. After the speakers there was a section for open discussion. The first person who spoke didn’t have a question but spoke at length with passion and pride about a campaign she has been involved in for several years. I had never heard about this campaign before and neither had most of the audience. Did that lack of knowledge undermine the value of her campaign? No, of course not. What did our lack of knowledge of her campaign say about our willingness to work together? Nothing. We don’t know something exists until we know it exists. The absence of working together in pursuit of the campaign’s aims wasn’t wilfull. It was fundamentally down to ignorance.

That’s a fairly straightforward starting point to asking a question about the validity of working together. But what about when you know about the existence of something but are unable, or don’t want to “work together?” Too often, I’ve seen people criticised (it’s happened to me many times) for not taking part or signing up for something. Some issues grab you: others don’t. Petitions are a case in point. For some, they represent a way of being involved in whatever the petition is about. For others, petitions don’t float their boat. For me, both positions are okay and the latter doesn’t represent dissent or an unwillingness to work together. I’ve been fascinated by the input of the #actuallyautistic community on social media to the many news stories about people with learning disabilities and/or autism in ATUs. There have been some brilliant exceptions but overall the contribution has been fairly muted. Certainly in comparison to my timeline during the time of the play that featured a puppet used to portray the autistic character in the production. My timeline was red hot with people coming together to express their opinion. Once again, I don’t want to be seen as making a judgement call here. I’m expressing my interest in how issues grab people and what it means when the issue doesn’t.

I see a lot of debate about who controls the “narrative”. I’m not exactly sure what this means but it feels like a false argument to me. Surely there are as many narratives as there are people campaigning. Let’s take three people who may be taking part in a campaign to get people out of ATUs: a person who has spent 3 years in an ATU, an autistic advocate and a parent whose son has spent 10 years detained. There will be three different narratives there. When each person tells their story they aren’t controlling the narrative; they are telling their story. Each story has value. They aren’t working against each other by sharing their lived experience. I cannot and won’t apologise for narrating my story from my perspective and I’ll take ownership that my story is my story alone and not impose that as someone else’s story. I also can’t apologise that in telling my story, I’m taking up the space of someone else’s story. It is for everyone to create their own space or take the opportunity (if they want to) of a space when it comes along. I feel uneasy when, in these situations, I see people criticised for not working together.

For all noble and altruistic intentions, there is always a shadow side. Once again, no judgements, it’s just the state of being human. I do find myself amused when I see a call for “working together” as a vehicle for taking a pot shot, of shutting down a necessary difference of opinion. It’s a regular feature in any Facebook campaign group. People disagreeing about tactics, framing, language will eventually be stopped in their tracks by “We must all work together on this”. Essentially, it’s about control, the very antithesis of working together but the person has successfully captured the moral high ground.

At this present moment in time, June 2019, what is, what are, the campaign(s)? I see lots of mini campaigns. Am I expected to be actively involved in all of them? I might want to donate a song to the Rightful Lives exhibition but I might not be too keen on signing a letter that Rightful Lives have composed to the EHRC. Does that mean I’m guilty of not working together? Am I letting the side down because my interest wasn’t pricked by one of the campaign’s initiatives? Of course not. Any other expectation is unrealistic. I work. I have caring responsibilities. I have a grill pan that needs cleaning periodically. I can decide how to use my time and energies.

This stuff keeps me awake at nights. I take up whole therapy sessions exploring emotions like guilt, selfishness, anger at fellow campaigners because I question that I’m not working together. Especially when my feeling is “I dont bloody want to”, the guilt takes hold.

Framing. I have to look at this one way to hang on to my marbles. There is one big campaign, with 100s of smaller campaigns taking place beneath it. I can’t give the one big campaign a name, although I’m pretty sure what it is. Walt Whitman wrote, “The powerful play goes on and you may contribute a verse”.

I know what my verse is and that’s enough. I am working together the best I can by contributing my verse.

We can’t do anymore than that. But that is brilliant.

The Complex Complexity of Complexity

Yesterday the government published two stinking reports: the Leder (learning disabilities deaths) review and the CQC review into restraint and seclusion.

The Secretary of State was conspicuously silent on the subject all day. I saw tweets from both Barbara Keeley and Norman Lamb saying that because the government hadn’t made a verbal announcement of either report, they, as opposition MPs were unable to table an urgent question in the House of Commons.

So where was Matt Hancock?

Late in the afternoon, he posted a photo tweet revealing his whereabouts. He was at the launch of a new coalition thingy – The Embrace Complexity coalition. Here are the key players in the coalition:

IMG_20190522_101629

And here’s the man himself at the launch:

IMG_20190522_101652

He talked about how the coalition will tackle the complexities in learning disability and autism by focusing on “joined up thinking”. The coalition will be putting their stakeholder thinking caps on to “develop new approaches for people with neuro divergent conditions and their families”.

It’s all in the timing. Don’t worry folks that the Leder report revealed that learning disabled are dying on average 25 years earlier than their non disabled peers – the coalition will save us all by embracing complexity. Don’t lose any sleep over the CQC’s report conclusion that care for many learning disabled people is “not fit for purpose” – the embracing complexity superheroes will rescue us from our woes.

Of course, it’s all bollocks. Offensive bollocks. Deathly (literally) bollocks. Whilst this bunch of leeches puff themselves up, I did a bit of embracing complexity of my own. I’m not sure how joined up it is but I hope you enjoy it.

#Embracing  Complex Dodgems

DSC04523

#Embracing Complex Tribute Bands

mg_0127

#Embracing Complex Birthday Cakes

birthday2

#Embracing Accessing the Complex Brighton Community

20170921_122455 (1)

#Embracing A Complex Reconstruction of The Beautiful South’s “Perfect 10” video

IMG_20190522_110734

#Embracing Complex Frosties for Breakfast

photo (2)

#Embracing Complex Cake Making for Uncle Wayne & Auntie Jayne

IMG_20190522_105122

#Embracing Complex Happiness and Fulfilment

shorter-cut-full.00_02_15_24.Still006-1024x576

If only life wasn’t so sodding complex. 😉