Babies of Rosie’s childhood friends are due. An anticipatory space rehearsed first, second, third hand. Labour. The stuff of fear, joy, anticipation, dread, sometimes devastation, pain, fear, joy. And happiness

I absorb updates, crochet. There’s always crochet.

Babies were a feature at the recent disability studies conference in Rekyavik. An unexpected and positive addition alongside the currently small number of self-advocates and family carers.

Sadness and such joy. New life, impossible sweetness, smells and the gentle warmth of the softness of the softest skin. 

I feel sad at how passively and comprehensively we were ejected from the baby manual/mainstream baby gig back in the day. An ignorance that led to us tumbling into a black hole of fear and bewilderment after our GP, lab technicians and others decided a sample of Connor’s blood was indicative of a problem that curtailed his right to be considered human. 

I walked him in his pushchair from the GP surgery across the park to the hospital that day to drop off the sample I’d pushed for. I didn’t know this was a first task in a role I was acquiring without realising. A role characterised by staunch advocacy and activism, contradiction, ambiguity, invisibility, blame and a consistent lack of anything outside of family life resembling the word ‘care’.

Connor was pronounced dead at the same hospital sixteen years later. I pitched up in a taxi from town that day. With Caroline, our administrator who had a daughter in her 50s with learning disabilities. Another carer.

Those sixteen years had led to a savviness of sorts, of finding safe spaces. A made up (fuck you) manual, family, bunch of mates and likeminded allies of teaching assistants, teachers, occasional social and healthcare professionals.

I wish now I’d said ‘Don’t fucking diss my beautiful boy’ and swiped away the doubters without a backwards look. We had a lifetime of joy, love and laughter despite the bleak terrain.

I think about our children and their partners. None of them met Connor. Jack almost did, house sharing with Rosie as students in Manchester before they got together. One of Rosie’s oldest mates Molly is expecting a baby any day with her partner she met at the same house in Manchester. H, born three weeks before Rosie and another lifelong friend had a baby today, hours before her younger sister M got married.

M and Connor pledged to marry if they were both single at 30.

New lives, joy and utter, utter sweetness. With the ever present, largely contained, sadness.

Nine years ago tomorrow. Eight versions of dealing with the day your child dies an unexpected and preventable death almost done now. I’m no longer flattened three, five, eight, twelve weeks before this day. Which is something. I was always baffled how Connor’s death day eclipsed his birthday.

I cook. That’s a constant. Cook and cry. I still can’t think about it though. That day. I just can’t. Or the day before. Nine years ago today.

This week I started to worry about churning the same static photo-based memories. About memories weakening. I notice his Shrek toy has been nibbled by moths. His clothes and other treasures so carefully packed away nine years ago look diminished, dated. Out of time. Once Lynx drenched t-shirts smell musty almost.

I think about our neighbour, Norah. In her 90s when we moved to our old house over twenty years ago. The first time I met her she told me about about her grandson who was 13 when he died. Picking his photo from a panoply of family photos on a side table to share and talk about. A school photo, cheeky face, uniform, promise, potential, life. I didn’t know how to think about or respond to what Norah told me. Then.

She was decades ahead of nine years. And still talking about him.

A mate mentions the closeness between Rosie, Will, Owen and Tom. And their partners. About the intensity of their love. Before and after Connor died. I look at photos. Including some from the lost day in London. A banger of a day in unexpected ways.

And breathe again.

Got caught up in a strange situation this last week on twitter involving some parents of people with Down syndrome (and possibly their children) after saying I felt uncomfortable about a young man being directly quoted by his dad as saying something I didn’t think he’d say. I’ve seen him articulate his views brilliantly before, just not in an establishment, senior BBC official type way. [It turns out his dad was quoting from a press statement]. I got a bit of a dressing down by various parents and people with DS.

“How dare you say that?” “Have you ever met him?” “You’re being ableist.”

The conversation unravelled quickly as one father compared tweeting on behalf of his daughter to Boris Johnson having a scriptwriter for his speeches. And then a young person I thought I was talking to disappeared in a puff of fakery.

“I’m Ruby’s mum”, she [her mum, not Ruby] eventually tweeted. From Ruby’s account.

It’s always odd when people have a twitter account in which other people tweet as if they are them. Some accounts make a distinction in the biog stating who the account is run by, or tweets by the named person are tagged in a particular way to make it clear who is actually talking. Some parents simply tweet as if they are their children with DS. And tweet or retweet other stuff on the same account.

Ruby’s mum continued:

“And it’s really none of your business”.

The trouble is, it is our business. By creating a public persona of their children as articulate in normative ways, by erasing their children’s actual voice, they are denying them their personhood. This, in turn, suggests they see their children as problematic. I’ve had conversations with parents who say but it’s important to raise the profile of people with DS (and by extension people with learning disabilities). Yep. Just not by creating an imaginary (ableist) version of people.

Gail captures this in her tweet:

This peculiar practice links to the Down Syndrome Act. A divisive and empty parliamentary Bill which singles out the 40,000 people with DS in England from the estimated 1.1m people with learning disabilities for special consideration. Why do people with DS demand special consideration? The short answer is, I don’t think they do.

The Down Syndrome Bill was fronted by a small group of people with DS who were presented as driving the bill forwards. They endured ‘hug a person with DS’ inappropriateness by countless MPs and certainly showed enthusiasm for the bill. I just wonder if anyone around them took the time to explain that the bill would only be relevant to 2 or 3 of their classmates and not the rest of the children they might have hung out with at school or extra-curricula activities growing up, their friends or siblings, and whether they might think that’s not right.

I don’t suppose they were shown that respect, sadly. It’s the heavily parent managed DS way or the highway.

A court of protection hearing has been taking place this week to determine whether it is in the best interests of 17 year old William Verden to have a kidney transplant. Without the operation he will die of a rare kidney disease in 12 months. William does not have the capacity to make this decision. The NHS Trust oppose the transplant. The court will decide if he can have the operation.

I want to chew over a few bits from the hearing here. Release rage through my fingertips. Give my old keyboard another pounding. I mean death really ain’t a decision you want someone to make for you. How could it not be in your best interests to have a potentially life saving operation?

[William is represented by Emma Sutton, Serjeants Inn. His mother Ami McLellan is represented by Tor Butler Cole, 39 Essex Chambers. George Julian is live tweeting the hearing. You can support George’s work here.]

The opposition to William having the transplant seems to be made up of a set of overlapping, baffling (non) areas/arguments:

Dirty diagnoses. Autism, learning disabilities and ADHD are inherently life shortening diagnoses. The ‘heady combination’ of William’s autism and ADHD ‘intertwined’ with his kidney condition generate layers of dodgy complication. He is very different ‘to me or you’.

Functioning age. William is the age of a 3 year old.

Control. William is out of control. He doesn’t respond to reason. He has a history of pulling out tubes. He would need to be sedated and ventilated for up to six weeks after the operation to allow the new kidney to graft. Two security guards are assigned to him in hospital.

Spiralling risks. The need for excessive sedation and ventilation brings new risks. While there is little evidence about the risks of more than 2 week sedation/ventilation for people ‘like William’ we can assume these will be worse than the risks for people not like him [anecdotally]. Intensive care is a terrifying place. William would either be restrained or drugged for so long he would ‘very likely’ end up with psychiatric harm.

Sleight of hand stuff. There is often dodgy dancing in these cases involving NHS trusts. A not so nimble flipping of arguments to score points. When discussion turned to adjustments that could be made in the process to support William, the trust counsel said it would be discrimination if he did not receive the same treatment as other patients. When the care plan which states his choices about things like the numbers of people present in the room was not followed, it was presented as helping William to learn to be more flexible. [‘Sleight of hand’ doesn’t capture these examples. When you think that the healthcare people with learning disabilities often receive is often poor, the suggestion that a trust is grabbing serendipitous opportunities in a dialysis suite to help a young man to learn to be more flexible is grotesque.]

Emma Sutton and Tor Butler Cole carefully dismantled the barricade of these nonsensical, ‘insane’ arguments over the last two days in court. For example, the fabled line pulling. [Which he didn’t do]:

He’s never actually pulled a line out but sometimes we need to do surgery quickly so it’s a problem if he did. 

No-one has seen him pulling it out but it’s unusual to go through as many lines as quickly and in a boy who tends to pick at dressings, I don’t think it’s unusual to think it might relate to the fact he’s had three lines in relatively short order.

From an autism point of view, his inability to tolerate rapid changes that will happen, so behavioural risk of pulling out lines and make treatments impossible to complete.

We learned how the things that get William’s goat (like being called the wrong name or having people too close) have been ignored and led to him being restrained. ‘Being restrained by two security guards is nothing like a prolonged period in paediatric intensive care,’ said one consultant. Underlining the ‘insanity’ of the arguments presented in a court of law.

‘Where did the evidence that William is functioning at the level of a 3 year old come from?’ asked Emma S. ‘Oh. I don’t know. From local expert records I think’.

The carelessness and casualness with which medics circulate empty, damaging statements is breathtaking. While ignoring William’s and his mother’s expertise. Despite limited evidence to draw on, the potential negative outcome of this operation for William was feasted on like a tabloid celeb secret.

A brighter picture emerged. Care has been taken to support William to understand his healthcare needs, the reason for his treatment and the transplant operation. He understands he needs the operation or will die [I know]. Tor BC and Emma S continued to deconstruct the illogical, baffling arguments of the Trust counsel that William was somehow so random, so off the scale of anything approaching healthcare, so inhuman that he should be denied the opportunity of a life saving operation.

When one witness said it was in William’s best interest that he have the transplant, she double checked he’d factored in the the 50% risk of recurrence. And took the opportunity to reiterate the pulling the line line. The clinicians and experts had got together to be creative about William’s care plan. A heart soaring moment that the trust counsel described as ‘quite unusual’ and ‘effectively a hot tubbing of all disciplines’. 

William had dealt with his shitty hospital treatment well and came across as stoic about having to have further medical treatment. When the chips are down and you’re facing death, people tend to. Dr Y dismissed William’s understanding of death in move of a breathtaking brutality.

I would like to know how William makes sense of death in comparison to Dr Y, the judge, or any other 17 year old. I suspect he’s got it as nailed as any of us. Particularly given it is closer to him right now.

The day ended on a kick ass note. Dr C finished his evidence reflecting on how impressive it is to see how much progress William has made: ‘not withstanding impact of environment on him and impact of his treatment… There’s something around everyone trying to give him the best chance.’

William’s mother was last to give evidence. I can barely imagine the horror of sitting through this shit show of ignorance, prejudice and assumption, with your child’s life at stake.

She described William as ‘very active, loves golf, any activity he can do, anyone has any jobs doing he’ll do it, he likes to be busy, and just full of life, he’s full of energy, he’s such a beautiful boy, beautiful inside and out. He definitely is a handful.’

Instead of pulling lines and dirty diagnoses, let’s focus on this point. Beautifully made.

My mate Fran sent a copy of this photo taken on a walk just outside the ring road near Headington. A formal, staged, Victorian looking photo from days of old. Rosie, Mary, James and Tom arranged on a bench, Connor standing behind, framed by a dramatic doorway. A statue on a pedestal in a darkened corner. 

I think I must have taken it. Franny doesn’t do black and white.

I remember that day, the tromp through the publicly accessible grounds of some stack that sits alongside the A40. Before the public toilet and burger van layby. Spitting distance from James and Connor’s school. About 2 miles from where we lived. It was the only time we went there.

I study the photo. Repeatedly. You do when you receive treasure. An image so full of detail it creates space to remember forgotten stuff. I pore over the faces, expressions, bodies, positioning, closeness, haircuts (pre or post the nit years), clothing. And magic.

I think about the walk. Meeting up at Shotover, inconsequential jibber jabber, admonishing Stan, chivvying and chatter. Coming across the folly. And a photo opp…

‘Hey, on the bench!’

Pre-smart phone anti-spontaneity. A moment of orderliness and patience. Recognition that stillness was required.

Rosie holding Connor’s arm and hand with practiced and easy affection. Mary in charge of Chunky Stan, James nestled beside her, his sleeve in his mouth. Tom cheesing it. Connor with his characteristic quizzical expression, eyebrows down, a slight chew of his left cheek. He was growing into life still. Sense making and trying to make sense of the incomprehensible. Which would eventually kill him.

Stan was working up to his Mydaftlife cover photo paw fame.

A moment captured. Happiness on an afternoon out in the school holidays.

I wake around 3am. Turn to my ipad for a cheeky scroll of happenings and see a link to an article posted a day or so ago about the Health Safety Investigation Branch. (Four words that should knock insomnia out of the sleepless park.)

Ex Health Minister Jeremy Hunt launched the Branch in 2016. In a speech (no longer available) he talked about mistakes made by good people and the need for a ‘proper study of environment and systems in which mistakes happen’. This was a patient safety first.

HSIB. An elite, ‘independent’ swat team of human factor dominated safety investigators proudly wearing no blame badges. Led by Keith Conradi. A human factors geezer plucked out of the aviation industry. A name oozing shaken not stirred gravitas and Branch profile referencing ‘fast’ jets, skiing and triathlons.

I squint at the ipad glare. What’s happened?

A Kings Fund report has found widespread bullying, sexism and a culture of fear in the organisation.

Conradi has resigned.

And with no apparent hint of irony blames the NHS England CEO. And unexpected challenges of managing diverse cultures within the organisation.

I find a post I wrote about HSIB in 2016. The Moon on a Dick. And feel a fleeting sense of blog title pride.

HSIB. Hunt. Blinkered by a human factors fascination, coaxed and coached by an ever ready, uncritical and largely white male chum club.

Hey! Don’t you be harsh missy, I was admonished at the time. [By people who should have known better.] HSIB is a groundbreaking body led by a serious man doing serious work you don’t understand. Let’s wait and see what this shit hot group achieve. We waited.

I try to go back to sleep. An hour, maybe two before a day of research meetings. Growing older with a learning disability. Living a flourishing life. Experiencing loneliness. Giving evidence at fitness to practice hearings. Experiencing inquests… Work that tumble-fills life with overspilling layers of graft, fear, reflection, doing stuff wrong, making right wrongs, fun, stumblings, work. And constant concern. Of not generating anything that makes a difference to someone.

And then I feel familiar anger and rage. Empty words, white noise, environments, systems, ‘good people’ and ‘mistakes’. Made up people channelled into made up jobs. Encouraged by self serving cheerleaders who collude in the erasure of sense. Rights. Integrity. Honesty. Humanity. Hypocrisy always waiting in the wings.

Nearly six years has passed since Hunt launched HSIB. Bereaved families continue to be brutalised by inadequate and punitive investigatory processes. And the world leading patient safety investigation organisation has generated its own brand of harm and trauma.

How long does this wait and see lark last?

Moved.

We moved to a new house. Left our 10th floor Manchester perch without Bess. Liberated our stuff from storage. The odd bit of fruit inadvertently packed seven months ago generating thoughts of passing time, change and cone of shame wearage.

We now live in the highest market town in England. A nifty 55 min commute to Manchester. Bitterly cold with numerous dogs to vicariously enjoy. Stunning walks in every direction. High Peak. Children and partners pitched up for a lateral flow test filled Christmas. Love and laughter. Labour and walks.

Unpacking tales continue. A poignant note in with the crimbo decs.

At the centre of town is water action. A town pump for people to take the water(s) not bottled and sold by Nestle or funnelled off to the nearby Crescent Hotel.

A woman filling two bottles she carefully packed in a small, well worn backpack. Do you come here often? Twice a day. Every day. It’s like walking a dog. Without the dog. I haven’t got a dog so this is my dog walk. In fact I am the dog. Laughter. Back up the hill. With her backpack.

An older couple. Filling a bag with large plastic bottles to pack in the boot of their car. Like a supermarket shop. What’s the water like? I’m 78. Eyes crinkling from an oversized, brightly coloured face mask. Can you tell?

A loosely bunched cloth bag of small, battered Buxton water bottles and lids balanced on the edge of the pump basin. A woman neatly filling and lidding. It’s good for my arthritis.

You here for the water? This is my last bottle. Will be finished soon… Windswept mop and builders gear. A Sainsbury’s bag packed with numerous 1-2 litre bottles. I’ve not drunk tap water for over 25 years. I wouldn’t. It’s full of plastic and rubbish. I used to drive over here before we moved to just outside Buxton. How often do you fill up? Shrug. Depends how much pasta me and the wife eat in a week.

It’s hard to imagine what it will be like to live here. I remember my nephew asking my younger sis soon after Connor’s funeral what happens if we move away from Oxford. I’ll never move I thought without missing a beat. During that long hot summer of 2013. Never.

Eight years on. We’re a long way from home. What was ‘home’. Then.

We live on the edge of town. It seems easier to think about life and loss away from dense suburbs. Space to roam, silence and beauty. And pump encounters. I reckon it will be ok.

Bess.

Stoic, undemanding, loyal and overshadowed.

She arrived as a pup sixteen or so years ago, joining a family with some big personalities, noise and laughter. Chunky Stan was already in situ, solid, demanding and desperately seeking solace. Manchester United level footy skills (in Alex Ferguson days). Out-dribbling us with dazzling paw and head work.

Connor. Laughing Boy. His bond with Stan extended to a special dialect and much face licking [I know].

“How was your day, Connor?” 

“Hey Connor, how was school?!”

“Connor, Stan wants to know how school was today.”

“Weioll Schtanny it wasch a gwood dway. Schue was lawghing in aschemblee.. Phwarhawhaw!”

If I said Bess wants to know, Connor would adopt a high-pitched sing-song voice and say something short. And closed. A tick Bess exercise. We knew she was a brief stand-in for the main pooch.

It was always about the Chunky one.

An unusual dog

Bess didn’t like us going away. Dog sitting mates would anxiously report they’d not seen her for a couple of days. She’d not eaten her food.

When friends took her for a walk on the local rec she’d scarper when off her lead. Crossing three roads to home. Sitting patiently on the doorstep. Waiting to be let back in. A comedy catch up caper for those passing…

“You looking for that little dawg? She ran thatta a way!!!”

And fear coated experience for the chaser.

When Connor was admitted to the unit, a mate brought round a large box of homemade coffee cupcakes. A proper cupcake plastic storage box with an airtight lid. We came back in later to find the box on the kitchen floor. Open with several missing cakes.

“Gawd,” we said. “Bloody dogs.”

Rosie woke a few hours later. With a crushed cup cake under her shoulder.

There was a cake under the covers in each bed.

Later

Connor died. We grew older. Stan lost his sight in one eye and then his eyeball in the other. Before the operation to remove his eye, the vet warned Jack Russell dogs were not good without sight. The next day we returned to the specialist surgery in the leafy Abingdon suburb. The vet walked into the waiting room cuddling a contented Stan, and handed him over. He was good to go.

The next few years involved negotiating grief, fighting for accountability, love and family life. The house became quieter as we slowly left childhood behind. The kids, their friends, the cooking, feeding, scrapping, laughter, chafing, chiding and noise reduced. Stan almost imperceptibly withdrew, his exuberance and affection demands became quieter and his presence shrank. He no longer came out to greet (or growl at) visitors, instead hovering in doorways and melting away to find quiet spaces. He died in January 2017.

Lockdown

From March 2020, life consisted of online catch ups with family and friends, short lived quizzes, work and walking round the local park and neighbourhood. Bess became our focus, our comfort stone.

“What about Bess...?” a constant refrain.

Without trying, she filled some of the complicated spaces of love, loss, absence and trauma. The whiff of dog breath, fleeting touch and intimate nearness. Always sitting or laying close by.

Bess in Manchester

We moved. Bess remained stoic and undemanding.

“Christ. How’s a 10th floor, city centre gig gonna work with Bess?” we wondered, as our lives were decanted into crates and we set off for northern adventures. 

Bess rolled with it.

A 10th floor routine was soon established in which she would walk to the window and front door to let us know it was time to go out and about. She became a city dog. Frequenting cafes and bars, canal walks and frequent petting.

The building we’re living in is dog friendly with resident red carpet hounds. Milly the British Bulldog. Branston the French Bulldog, dachshunds, chihuahuas…

Only two weeks ago, a young couple in the lift commented Bess was their favourite dog in the flats. A week later, after speedily deteriorating, she was put down peacefully.

I dunno. She was old and had heart issues for the last three years. I thought her dying would be sad. Inevitable. Almost welcome given her increasing discomfort and the 10th floor hikes in and out. A friend messaged. Clear the decks of meetings tomorrow and ignore your emails. Nah. I’ll be ok.

I wasn’t.

Bess was a beautiful soul and much loved family member. I agree with George. I hope you are chilling somewhere with Connor and Stan and they ain’t treating you like a tick-Bess exercise. You were always so much more. It just took us [me] a while to realise.

Been distracted by the emotional, physical and other work involved in changing jobs and leaving our beyond loved, comfy, tatty home of 20 years. Grubby, sticky finger prints, lego bits, detritus, memories invisibly tattooed in every space. Dust. Stuff.

Still. Job done. Belongings in storage in Southall. Currently in a rented flat 10 floors above central Manchester. Our lives involve scooping up Bess several times a day for a blitz around a newly landscaped area just off the Oxford Road. Trip tropping along a small section of the River Medlock, dodging diggers, picking up shit, passing the soon to reopen Fac251 and a long line of Ubers dropping off food to the students in the block opposite.

We roam the compact city in awe of the friendliness and vibrancy, density of buildings and building work, sights, sounds, smells, broken glass, canals, trams, buses. Manchester Met too is quite the revelation. Grounded, ambitious, enthusiastic, lively, committed. It feels a good fit. State school (first-generation university) hovering in exclusionary spaces can be uncomfortable despite good intentions.

Catching up with this week

I’m not sure what to write about learning disability related stuff this week. It feels suffocating. Reviews published documenting horror and brutality (again). Recommendations responded to in a woefully incoherent way by Helen Whatley, Minister for summat. Empty wordage?

Evidence around the ways in which people with learning disabilities have been disproportionately impacted by the pandemic (mirroring how they are disproportionately impacted more widely in life) continues to be published.

I sat in on a Court of Protection hearing earlier. 

A person with learning disabilities detained for over 20 years in an Assessment and Treatment Unit. [Can we ditch this nonsensical name for what are effectively prisons?] Ready for discharge in 2013 while a home – with stuff, memories, more memories and dust – has yet to be sorted. The unfolding hearing involved a stand-off between a well thought through plan for a home/support by a specialist provider working with the family, and business as usual cruelty by the other ‘interested’ parties. Including commissioners and NHS England and No Improvement.

The judge was an odd mix of righteous anger and irritation about the lack of progress, and apparent carelessness about the ongoing brutalisation of lives. [Paraphrasing] ‘I would have said this was glacial progress but recent global warming has made glacial movement faster. Do we have an end date in mind or an end of decade date…?’

The hearing leapt to discussion about an adjournment. No decision today. More information was needed. Eight years on. Diary talk. The end of October for one day. November for two days? Busy, important people. Would new witnesses need cross-examining? Yes.

X’s [sorry, (no) transparency order in place] parents sat in court, barely visible through the Microsoft Teams lens. Their mum fiddled with something throughout. A tissue? I almost can’t begin to imagine the pain of listening to a set of well oiled, privileged bods treat someone’s life as a thing to poke, prod, describe as clinical presentation and dismiss. And then of course I can. I well up again writing these words. Nine hours later. The sadness in listening is indescribable.

Towards the end of the hour, after (dis) interested parties talked about adjournment like the moving of a Hermes delivery, X’s mum spoke up. Disrupting the proceedings. The order. The power. Unruliness. A smirk from one counsel. Teams court unusually offering the view of the judge.

Her frustration, disbelief and despair were palpable. She asked how this delay was possible. She and her partner were in their late 70s and early 80s. They would be dead before their child was released and living in their own home. Their lives had been destroyed.

Yes.

Adjourned to November 8-9.

 

In a different city now, mate. We’ve finally scattered. Or scarpered from home.

Belongings in storage.

The usual countdown to July 4 disrupted. Places and spaces stuffed with memories, family and friends, distant and muted. The annual, chaotic nosh and booze gig halted by a pandemic you know nothing about. Though I think of those years you’d ball your fist tight, shove it under our noses, ask ‘Did I sneeze on you?’ and wonder.

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Losing well worn, familiar grief spaces I worry about not missing you with the intensity and pain that is the lot of the bereaved parent. With so much new to see, hear, smell, absorb, distract I almost forget at times.

That’s ok, right? We’ve carried on, smashing life in our different ways. As we always did. Celebrating the joy, brilliance and laughter you brought to the party.

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I just miss you so fucking much.