Down the down escalator

A couple of weeks ago I used my Huffington Post blog to pay tribute to Glyn Worsnip, a stalwart of Radio 4 throughout the 1980s.

Sharing his experience on air of being diagnosed with cerebellar ataxia, the illness that cost him his job and eventually his life, made for the most moving radio I had heard – and the most successful broadcast in Radio 4’s history.

Glyn Worsnip described the effect of his illness as running up a down escalator – which was to inspire the title of his autobiography.

Which reminds me of Jenny’s brush with a down escalator.

Our home city presented some insurmountable obstacles to a wheelchair user. There were lots of steps to front doors or both homes and shops. It’s only really since the late 1990s that disabled access has been taken seriously.

When Jen was in her early teens, we went to the newly built Ridings Shopping Centre. Browsing Marks & Spencer, Jen managed to walk around most of the store on sticks, but was confronted by a down escalator.

Mum placed Jen’s hands on the hand rest either side, but the escalator steps moved down more slowly than the handrail. Soon Jen was very nearly flat on her face. The emergency stop button was pressed and a shop assistant came and helped out with a ‘what on earth do you expect to happen if you bring your disabled daughter shopping?’ look on her face.

I often wondered how Jen ended up in that position. But then, using the escalators on the London Underground 20 years later, I realised: yes, the handrails do move at a different speed – even now!

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The Thundersley Invacar

As a young child in the early ’70s I’d go along with Jen to many of her doctors’ appointments.

We’d get picked up from home by an old ambulance – converted into a sort of minibus – which would do the rounds collecting mostly elderly and some disabled patients on the way to the hospital.

There was lots of hanging around while Jen saw the doctors. I got to know the outpatient departments well – disinfectant smell inside, a couple of strange blue cars outside in the car park.

Unlike those Post-war British motoring icons Morris Oxford and the Austin Cambridge, these odd blue vehicles hailing from the Essex town of Thundersley have all but disappeared. I’d forgotten all about them until my teens, when I spotted one in the most unlikely of places, a car museum on a school visit to Germany.

Say hello to the Thundersley Invacar.

These small three-wheelers had room only for the driver. The side door slid open to the front for easy access – a neat bit of design. Other features were quirky to say the least – the ‘bonnet’ was shaped like the lid of a toilet seat (and opening it actually revealed the boot – the heavy engine was in the back, so to help steering in windy conditions, owners had to search for anything heavy to weigh the boot down). As for the steering wheel, well there wasn’t one. Instead an odd steering bar, which made me imagine a Spitfire’s cockpit from the movies. For all I knew, several Battle of Britain veterans may have been driving the things.

Leased to disabled drivers by the DHSS, they gave a different spin on the Henry Ford maxim: you can have any colour you want, as long as it was turquoise.

I’m afraid the DVLA doesn’t publish records on how many are left, as the car was banned from our roads in the early 2000s. I don’t know how long it took to get from 0-60 miles per hour, but I do know that they could reverse as speedily as driving forward – now there’s a scary thought!

If anything, the Thundersley Invacar is a symbol of how far Disability rights have come in the last 50 years. Today the whole idea of marking out disabled drivers to other road users like this is bordering on bizarre. And marketing an adapted car as Invacar (short for ‘Invalid Carriage’) would be shot down at the first focus group.

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Helen Bailey

In these days after the sentencing of Helen Bailey’s murderer, we’ve learned how a dangerous predator has targeted a writer at a time when she was vulnerable.

As Deborah Orr points out in the Guardian, elements of the press have associated it with her age and gender, where ‘middle-aged’ or ‘older’ women are described unhelpfully as somehow inherently vulnerable.

So it may help to remind ourselves that Helen Bailey’s vulnerability was centred on the ordinary experience of grief and loss – in her case, the sudden loss of her husband. Helen Bailey opened up about this, starting a blog Planet Grief. Ironically, it was this openness which made her a target.

But Planet Grief may well have been helpful to others going through their own bereavements, many of whom posted their own stories on her site. And it’s still going – why not pay it a visit here?

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The Milky Way

The Milk Marketing Board produced some of the most memorable advertising of the early ’80s with slogans like ‘fresh milk’s gotta lotta bottle’ and ‘nice cold, ice cold milk’. Odd times, when prime time TV featured ads for no-brand staples like ‘milk’ and ‘cheese’. And showbiz stars from Pat Coombs and Larry Grayson to Cissie and Ada (aka Roy Barraclough and Les Dawson) enticed us with ‘fresh cream cakes’. Times of the daily pinta in glass bottles on your doorstep.

By the time Jenny was living independently, those days were all but over.

We’d moved on to a consumer debate about the colour of milk bottle tops. Each supermarket chain had its own colour scheme for full, semi-skimmed and skimmed. Bizarre as it seems now, it took ages to settle into our present day consensus of blue/green/red.

For Jenny, the colour coding was almost irrelevant. First and foremost was, how to get a bottle someone with cerebral palsy could actually open.

Milk was one of those everyday necessities on Jen’s shopping list. Yet because of her disability, buying something as simple as a pint of milk could define or frustrate her entire shopping regime.

A one pint container was the maximum, as it was impossible for Jen to lift and pour anything heavier. So milk cost her more than non-disabled people who could save money buying a family-sized supply. Over a lifetime on benefits that can add up to quite a tidy sum.

Then there was carton vs plastic. Cartons were more commonplace then, but more difficult to open (for some of us non-disabled people too!) Imagine opening a carton, and focus on the strange combination of fine motor skill and brute force you need to apply. Then imagine doing this with the spasms of cerebral palsy – with a poor sense of space and coordination. Intense concentration, then a ripped package and the contents all over the place.

But no point in crying over spilt milk. Jenny would plan her shop according to which shops kept plastic one-pint milk bottles. And which shops she could get to. And which shops she could get into with her wheelchair. Surprising really, that she found time for much else.

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Get on the bus

In a significant milestone for disabled rights, the Supreme Court ruled in favour of wheelchair user Doug Paulley’s argument that a bus company hadn’t done enough to get a woman with a pushchair to heed the sign ‘Please vacate this space for a wheelchair user’ and allow him onto the bus.

Bus companies are not expected to compel other to vacate the space but are now expected to make a stronger effort – phrasing the request as a requirement, stopping the bus for a few minutes to bring pressure, etc.

It’s clearly an achievement, but doesn’t let us off the hook. We have big cities, congested and bustling with competing needs. We want full Disabled access and opportunity for parents of young children – especially women. So clarity about the law is only a start. We will need pressure on bus companies to re-think design (fewer seats perhaps), and pressure on pushchair companies for good, slim line design more appropriate for urban spaces. But most of all, we’ll need to work on changing attitudes.

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Arteriovenous fistula

I must have been about 20, sitting at a table at uni having dinner. Deep in conversation, I couldn’t help noticing that the guy sitting at right angles to me was getting increasingly distracted. His eye contact faltered as he kept stealing glances at the table. Were my table manners that bad? Was I holding my knife all wrong? Of course not. I finally realised what he was looking at as he asked:

‘What’s that thing on your wrist?’

It’s a difficult to describe scar which dates from the week I was born. And, to date, he’s the only person who’s ever asked me about it. The scar’s not that noticeable and is often covered anyway. I can’t say I’ve ever been particularly conscious of it as it did help save my life and is part of who I am.

To give the ‘thing’ its correct name – it’s the leftover marks of an arteriovenous fistula created at Hammersmith Hospital in my first few days of life, in 1968. The fistula was a connection between the artery and vein in my wrist – a technique apparently developed in the Bronx only two years before – to allow for dialysis of adult renal patients. Or in my case as a premature baby, to get more oxygen into my bloodstream while my lungs were underdeveloped. Thinking of the doctors carrying out such an intricate procedure on a tiny premature baby is still mind-blowing.

The scar means that I have fun when anyone tries to find a pulse, their initial confidence inevitably giving way to a defeated shrug.

I wonder how many middle-aged men and women there are walking around with an arteriovenous fistula scar on their wrists, a reminder of a revolutionary medical procedure of its day.

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‘Don’t do it Di!’

When you’re bereaved of a close relative or friend, even 20 years on, there are moments when you think: ‘I’d have shared that with him or her’. It might be a news story, the death of a celebrity or something as simple as it’s snowing.

With Jenny, no doubt I’ve have avoided mentioning today’s Royal family related story as we’d have ended up arguing. The Queen and Prince Philip have heavy colds, so instead of going by train to Sandringham for their traditional Christmas break, they were taken by helicopter. Perfect fodder for a republican/royalist spat.

It reminds me of the last week I saw Jenny, in August 1996. Charles and Dianna’s divorce was to be announced in the afternoon of 28 August. Still blissfully unaware, Jenny triumphantly returned from a charity shop, where she’d bought an expensive Charles and Di Royal Wedding plate at a knockdown price that morning. Equally unaware, I had a go, saying no wonder the plate was so cheap, they’re an embarrassment; and, wouldn’t Jenny be better off investing in royal divorce memorabilia?

Strange how history got the better of both of us.

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I’ll not be home for Christmas (again)

The first post I’ve ever repeated in this blog, but rather fitting.

The empty chair at the dinner table

That great pre-Christmas schlep out of London now behind us, I’m happily ensconced in the guest room overlooking the village green.

It’s become a new normal – the food, the drink, the family quibbles the making up afterwards… And that’s just why I’m writing this – to let those facing their first Christmas without a loved one know that it can and does become normal again.

There’s no getting away from it, the first Christmas after losing a loved one is horrible. It’s part of a pattern – first Christmas, first birthday, first anniversary of the death. Yet nothing brings it home quite like that sad empty chair at the family Christmas meal.

Jenny in festive mood, three years before she died.

Jenny in festive mood, three years before she died.

Our first Christmas without Jenny came just over two months after her death. We were still shaken from the trauma – being told that she’d died after her clothes caught fire in her kitchen. No surprise then that I was still numb – observing myself and wondering what I should be feeling.

The actual ‘Christmas’ experience was worse than I imagined – family members going through the motions of a joyless meal. All in complete silence. I still remember making a quick exit down the garden to the privacy of the garage, where I could cry without being seen.

I’ve heard of customs to remember the dead – the meal celebrating their life, the glass of their favourite tipple left out on the table. But for my family that year, it probably would’ve been better to just call the whole thing off. No pretence, just a time to be properly sad.

I’m sure there’s no right or wrong way to go about mourning. So if I can give any word of advice, it’s this – just be kind to yourself and do what you want. And remember, life may not ever be the same again, but it won’t remain joyless either.

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Awkward anniversaries for the bereaved

Anniversaries are difficult, both as a marker during the grieving process and as a sometimes unexpected reminder later on. Most people agree the first is the worst. That was certainly true for me. I’ve now got 20 behind me – birthdays, ‘death days’ and 19 Christmases. So how does one cope? In these internet days, it’s easy to find loads of tips: poetry, private rituals, you name it. I tend to find that burying the most difficult day in a short trip abroad does wonders. Certainly, nothing would work for everyone, as this is all so personal. What it comes down to in the end, is that you’ve just got to find your own way for getting through it.

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Twenty years after the inquest

It’s been a year of high-profile inquests. The cases that come to mind are Deepcut soldier Cheryl James’s inquest in June and nurse Amin Abdullah who died in February. Although I was moved by the news reports at the time, they are again in my mind today, the 20th anniversary of the inquest into Jenny’s death. Jenny’s died in an equally traumatic way, but her life and death, and subsequently her inquest were not high-profile. Nevertheless, even without the media intrusions, I could relate to the families who had to go through these.

Today, coroners are very mindful of the experience of bereaved families, and the Ministry of Justice even publishes a helpful guide. But in 1996 I was woefully ill prepared. Perhaps 20 years on, it’s time to draw on my memory and come up with some tips for those unfortunate enough to have to face the inquest into the death of a close family member.

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