Sharks on the rooftops

I went for a wander round Headington late afternoon earlier. In part to practice taking photos with my new camera and because I remain so blooming upset/agitated by the description of LB in the NMC hearing ‘determination of (un)facts’. How dare a fucking ‘panel’ of a nurse and two lay people who never met LB and have done nothing to try to understand anything about him be so callously disrespectful of who he was.

No doubt they will argue their determination is based on evidence but evidence is not statements like so and so ‘seems to suggest that…’

Distressing, unnecessary and cruel.

In the late afternoon sun I wandered past the Co-op where LB smashed doing the shopping back in the day. Still makes me chuckle. On to Posh Fish, a go-to chippy for 20 years though our visits have dropped to rarely as the kids have grown older. My mum and dad took Rosie, Tom and LB there for some nosh on the day of my viva at Warwick in 2006. Rich and I pitched up later to have a celebratory beer with them. Such a joyful day. Posh Fish rocked. Reach for the stars stuff it seemed at the time.

Sharks on the rooftops.

Then round to the other Headington shark. The one we used to go and look at when the kids were tots. Rosie was convinced for years it had been a fish and chip shop. I think maybe as a way of trying to make sense of an enormous shark apparently falling head first from the sky through the roof of a terraced house.

At the end of the shark road is the funeral home LB was in before his funeral. Well in and out of because of the balls up over his post mortem. Behind the side window is the ‘viewing room’ or chapel of rest. It’s just a room really but a room completely and devastatingly not like any other room.

[For geography nerds, the John Radcliffe Hospital is up the road there on the left.]

As I waited to cross the road directly opposite a coach went passed blocking my view. Oh my…

Angel Executive Travel. No.fucking.way.

This coach passed me on the day of LB’s funeral. Walking in distress and agitation in the park across the road (the same road). A different type/flavour/density? of distress and agitation.

I didn’t know whether to laugh, cry or punch the air.

I’m taking air punching.

At the end of a week in which professional sharks (not our local fun and quirky ones) have once again been circling for blood and behaving like fucking spunktrumpetweeblewarblers we’re not going to let LB’s memory be sullied in a crass, ill-informed and deeply biased report.

On Friday we’re back to London to fight the fucking fight that never, ever seems to end; to try to establish the humanity of our fun, quirky and beautiful children.

Housecoats, aprons and mucky labour

Captivated by the women of Galicia along the last section of #CaminoLB.

“Can I take your photo?” I asked pointing at my camera. A few said no. Others stood tall. Looking me in the eye with quiet confidence. There was no artifice or prevarication.

Incredible, beautiful faces.

Lines. Life carvings. Contours of determination, humour, dignity. Resilience. Well earned, authentic resilience.

Glimpses of triumph and more. So many stories.

Housecoats, aprons and mucky labour.

Back to work tomorrow.  It’s been a long five years.

I start walking…

Started walking to work this week. Prompted by consistently destructive levels of rage generated by the continued non action around the Sloven senior team.  (Despite an extraordinary evidence base of failings.) About 3-4 miles depending on the route. Monday was day 1. Bit spooky walking along a long, isolated stretch of footpath by the river to University Parks. Rich came with me the next day, love him. We found a spooked dog. Pippa. I got to work later than planned. I changed my route to High Street/George Street/St Giles…

Then went to Staffordshire, via Birmingham New Street, on Wednesday so walking was shelved. London on Thursday. Watching walking instead.


Yesterday we walked to town. Raging slightly muted by pounding the streets. Absorbed by watching/snapping everyday life. Back on the High Street, a vaguely familiar couple were snugged up on the bench by the bus stop.


I photographed them before. Four long years ago. In the life that was. As snug. Just mobile.


George Street, Oxford. August 2 2012

Today I didn’t leave the house. Among working and hoovering I started reading Victim and Victimhood by Trudy Govier. Unpacking what and who a ‘victim’ is, what being a victim means and different ways of making sense of victim and victimhood. Silence, blame, deference and restoration. Hmm. I’ll keep reading. And walking.

And get a print of the photo to drop off to the couple who apparently sit on the same bench most days. And, I suspect, have a story or two to tell.

And wait. Still.

Meeting Tyrone

I bumped into Tyrone this morning in Cornmarket. Tyrone is a couple of years older than LB and is member of My Life My Choice. He was going to catch the no. 6 bus to Wolvercote to the day centre (that used to be near Sainsburys in Cowley).

“What do you do at the day centre, Tyrone?”
“Snooker. Play on the Wii if it’s out. Or just chill.”
“I can remember taking LB to Parasol there.”
“Yeah. I used to go to Parasol but I gave it up because I got too old. LB would be too old to go to Parasol now.”

We stood at the traffic lights by Debenhams. My bus was waiting. After vague indecision I sort of coaxed Tyrone across the road alongside me despite the red light.

“Sorry Tyrone, I always tell my kids they gotta wait for the green man…” I said once on the safe side.

“Don’t worry,” replied Tyrone. “I do that if my bus is there.”

‘This Summer’

During hours spent outside, or awake at night, I’ve been listening to music. Trying to find music that fits. Ironically, in the early days of LB’s ‘diagnosis’, when he was a just a pup, Faure’s Requiem was the soundtrack to my sadness.  This shifted substantially over time and I can no longer listen to it. It didn’t fit. I was wrong. So much was wrong. LB wasn’t. And we certainly weren’t mourning him. Then*.

The weather’s been so unusual it’s created an almost film-like backdrop to our devastation. Consistently baking sunshine transforming mundane suburbia into a different world. I remark on this remarkable summer constantly. To pretty much everyone I talk to. It’s important that the sun has shone so unusually since LB died. It’s a summer that will be remembered. And the sunshine theme, with the ‘do’ soundtrack of summer songs, the late evenings sitting outside, the sunflowers, both shop bought and planted in our tatty garden, has a positive feel to it.


The day of the ‘do’.

So. Where am I at with the sounds? Anthony and the Johnsons were a stalwart companion for the first couple of weeks. Capturing the sadness exquisitely. But then they became a tiny bit annoying. And irrelevant. I listen to ‘Toast‘ by Tori Amos. Written in memory of her brother who died. And ‘Coral Room‘ by Kate Bush. About the loss of a mother. But ‘This Summer’ is creeping in as an unexpected frontrunner. A song I used to listen to on my commute home from Royal Holloway where I led five seminars every Friday on a contemporary social theory module. A regularly fraught experience of scrabbling to understand and make sense of the favourite theorists of the course leader (a white male-centric bunch) probably inches ahead of the students.

I’d sit on the train from Reading to Oxford, early evening, frazzled by the full on intensity of the day and the speed reading that built up to it. And I’d listen to this song. It was sad, calming and peaceful. A kind of vicarious insight into loss experienced by others. Always others.

Until a moment, a split second, one sunny early July morning, when I became ‘one of the broken hearted’.  Without warning.

 *Trying hard to celebrate, not ‘mourn’ LB now. Tough gig.


Looping the loop

Gearing up for the inevitable/seemingly obligatory ‘x weeks ago…’ countdown. The screaming ‘If only…’ The relentless, grinding background loop of ‘Wha?? Eh???? LB??? How could this happen?..’

OLYMPUS DIGITAL CAMERAI feel an intense sadness that he had a visit to the Oxford Bus Company planned that day. A trip that Sue (Charlie’s Angel, pallbearer, mermaid facilitator, teaching assistant extraordinaire) had magicked months earlier. In the same way she managed to get lorry drivers/AA mechanics and the like to give LB a tour of their trucks/vans/equipment on the roadside. With accompanying photos. One of life’s understated, gold plated doers.

The Oxford Bus Company. An outing that never happened because we lazed around. Careless with the time we had. Time that was eaten up with nonsense (and ultimately pointless) meetings/interactions about (non) care, (non) support, non anything. With a dose of full time work and broader family life. We lost sight of what was important to LB. And then we lost the opportunity to make this happen.

I feel anger about the way in which families/carers are typically pitched into this space of opposition to any sniff of support and services because these services are so rationed/difficult to access/inappropriate/pointless/inaccessible or any one of a hundred other reasons. This becomes magnified once dudes turn 18 and family love, understanding, knowledge and interactive expertise is sidelined. This space is all consuming, exhausting and unnecessary.

So much energy, effort, emotion goes into ultimately nothing. A wearing dancing, prancing, phoney two step with services that hold the power, the key, the password, potential future and ever present sword of budget cuts. Chuck the nonsense of ‘choice’ into this mix and things become impossible to make any sense of. I don’t know of a single parent who is happy with (and no longer a major actor in, albeit not always a welcomed one from the perspective of ‘service’ providers) the life of their adult learning disabled dude. And I know quite a few.

How can this be? Such an enormous gap between policy and practice. The policy speak talking the talk of choice, autonomy, independence, leading in practice to the sidelining or dismissal of parental expertise and love. And parents/carers walking the walk. Beavering away in the background desperately trying to facilitate, fight for, negotiate and sustain a half decent existence for their dudes.

This is the 21st century? We have enough research, reports and recommendations around this area to fashion a papier mache replica of the Houses of Parliament. How can things still be so bad?

Nine weeks ago today, around this time, our beautiful, exceptional dude got into the bath. Probably up bright and breezy because of his long awaited trip. And there it goes again.

How could this happen?

Revisiting tits and trolls

A rare post about twitter. Sorry twitter haters. A while ago I wrote a pithy little number called ‘Of tits and trolls’.  Now, after getting the latest Moran storm tweeted into my timeline over the past 24 hours, I’m rethinking my support of the ‘block’ button. Basically Moran wrote a column about equality which started with a parody which was the only bit available to view online for non-subscribers of the Times. This caused offence. Moran has a bit of history of causing offence [sive].

Helen Lewis then wrote a laboriously detailed defence of Moran putting ‘everything’ in context. This has been retweeted off the planet. The trouble is, the context that Lewis draws on is sterile and stripped of the emotion, pain, devastation, weariness, tedium, injustice, discrimination, harm, exhaustion, etc, etc, etc, often experienced by the people who are so incensed by Moran’s careless journalism. For me, Lewis’s post reinforces some of the complacency and ignorance that tinges the writing of many journalists (not all of course) who have little or no understanding of what it is like to grow up outside of, or on the margins, of mainstream life.

Should Moran have some sort of insight or understanding of these experiences? I think she probably should given her position and reach. She’s in a position to make a difference. But there’s the block button. That protects Moran (and others) from having to engage with
difference. Well the block button and the concept of ‘troll’.  The trouble is, blocking ‘trolls’ (i.e., people who disagree with you) will lead to twitter becoming a tedious, turgid space where you’re surrounded by similar others, with your views and values protected as kind of cosily superior and untouchable. Instead of blocking, ignoring offensive posts is probably as effective. And allows space for discussion and change.

The British Gas Plumber

“Must admit, I’m not a great dog lover, me. And you get them…they kind of come up to me and sniff me knees. You know what I mean? They sniff me knees, but once one dog’s sniffed me knees, other dogs can smell that dog on my overalls and they all want to sniff me knees. I got a cat at home. That probably doesn’t help either, as the dogs can probably smell the cat too.  So I tend to shoo em away, like. You know, shake me legs a bit. But one man got a bit uppity when I did that. He was like “My dog wouldn’t hurt anyone!”, but these days, you don’t really know that. A lot of dogs that shouldn’t hurt people do hurt them. So I try to keep away from them… Yeah.. Just the one sugar thank you.”

Baby Jesus in the walnut

“Come on everyone! Time to decorate the tree…!!”
“Eh? LB come and decorate the tree NOW.”
“Mum. Can I go back on Youtube after Mum?”
“I don’t think it’s straight. Is it straight?”
“It’s straight…”
“I think it’s leaning to one side. Look…”
“It’s straight...”
“Rosie could always go upstairs and get her protractor…”
“Mum you don’t know what a protractor is, do you.”
“Yes, I do.”
“I’m going to look for the baby Jesus in the walnut. The one I made at nursery.”
“Watch that angel, the head fell off remember…”
“I’m going to put this one round here on this branch…”
“Grrrrr… I’d forgotten how much Tom talks…”
“And this one can go here…”
“Tom you don’”
“LB put the bubble wrap down and get some decs on the tree.”
“Yes Muvvar.”
“Hey! I found the walnut!!!…Oh wait. It’s awful.
“I remember it being much better than that. I thought it had a proper face and everything. Look it’s just got two dots for eyes…Felt tip dots??”
“HAHAHAHA!!! It’s really rubbish!!!”
“I’d forgotten how stressful decorating the tree is.”
“I still don’t think it’s straight.”