Friday, 28 December 2018

There's a Camel in Our Cellar...

One of this year's Christmas presents was Rhodri Marsden's A Very British Christmas, an affectionate tribute our national traditions and eccentricities regarding the festive season. My reactions ranged from "Oh, yes, I remember those..." to "They do WHAT??!!" and agree with his conclusion that there simply is no 'right' way to do Christmas, and part of its glory is that you can be as reverential, daft or indifferent to it as you see fit.

In our house, this includes continuing to hang up the decorations made of DAS modelling clay which I made when my partner and I were students and couldn't afford to buy decorations:

Or my late mother's 1930's cherubs, complete with the piece of cotton tied unceremoniously round one of their necks, the one with the tetanus-inducing wire hook on its wings and the one with no wings at all. These used to glow in the dark, which has spooked the odd guest who wasn't expecting it, but are now completely glow-less.

And then there is the falling-to-pieces rocking chair my sister gifted us as she didn't have the space for it, and about which we keep saying "We really should get rid of this" - except it's where Rudolph the stuffed reindeer spends his Christmas! Originally, he was placed over the back of the chair to stop our small children rocking it back into chimney block or - worse - the glass doors of a cabinet when it was moved to accommodate the tree, but they're now adults and we are only keeping the chair so Rudolph has somewhere to sit...

These are all 'traditions' which relate to our immediate family, and are changing now the kids are grown and off doing their own thing. We don't 'go away for Christmas' (partly so as to minimise the change/disruption for our autistic daughter) - our family get-together is held a few weeks' earlier, when we de-camp to Bristol for the weekend to visit my mother in law, and where my family come up from Devon to meet for a meal. At one time there were 12 of us, but the passage of time has reduced the number and this year we were 6 and likely to get smaller still over the next few years, as the younger generation have their own work, study, or families to contend with.

There is one major component missing from the Christmases of my childhood, though. My mother was a dancing teacher and she and my dad ran an amateur theatre group in my home town. Despite having a Municipal Theatre (later re-named the Hazlitt, after one of Maidstone's few notable residents), the Borough Council didn't see fit to put on a pantomime, so mum and dad decided to fill the gap. Mum always said her pupils had little outlet for their dancing other than interminable 'dancing displays' and that it would be good for them to get some actual theatre experience, and for their parents to see the results of the lessons they were paying for.

Between 1966 and 1976, we provided the town with its panto - mum's rule that only pupils of six and over could take place, meant that I missed out on being in the inaugural production of Cinderella (I was 5), although I did sit in the audience with my granny, fuming that I wasn't allowed on stage, especially as I knew all the dances. From the next year (Aladdin) until I left home, I was in every production, initially as one of the dancers, then taking on small parts and eventually principal boy (Aladdin, Dandini) or - much more fun - comedy sidekick.

From September every year, when rehearsals started, the house turned into Panto Central. I told my first proper boyfriend "This is what I do every year. You don't have to get involved but..." and bless him, he subjected himself to several years of dancing, singing and tights on my behalf. We lived 'above the shop' - dance studio downstairs, flat above) so scripts  were churned out on the dining table on an old Gestetner machine:

The living room  was festooned with costumes, the sewing machine had to be moved in order for me to do my homework, scenery-painting took place in the cellar (there's a whole other story connected to that - see "A broken mug"), it completely dominated our Autumn and Winter. On Christmas Eve, the panic would set in and mum would rush round un-hanging the costumes from the living room picture rails and hanging them up somewhere else for the duration; the ironing board would be stowed away and the living room would again become a normal family space for two and a bit days.

My special Christmas job was emptying the ashtrays, in advance of the Christmas Eve open house my parents held for friends and family. Mum baked industrial quantities of mince pies and chicken patties (I was never sure what these were - the filling suggested some kind of poultry-based, short crust vol au vent) and a punch which I've never managed to recreate - cider, brandy and a cinnamon stick thrown at it. Mum also used to make her own Christmas puddings which - every year - dad would assess as "Lovely, Fred, but not quite as good as last year's." Her reputation for them grew and at one stage she was producing about 6 puddings for friends and neighbours as well as ours. She never quite got out of the habit of mass-production, though, and was still producing extra puddings and tons of mince pies even when it was just the two of them. The mincemeat recipe - dad's thing, nicked from Mrs Beeton - was passed down to me. It was only when I was discussing mum's newly-diagnosed diabetes 20 years later and mentioned the mincemeat having no added sugar that we realised dad had missed the sugar off when typing out the recipe (I still make it without).

Christmas pudding, 1972 (the year I got a Kodak Instamatic). Not quite sure what that drink is in my sister's hand...

Anyway, back to panto. Once Boxing Day was over, the costumes reappeared, and we prepared to move into the theatre. As my birthday falls between Christmas and New Year, my birthday tea was very often held on trestle tables onstage, between the matinee and evening performances. In a pre-Whacky Warehouse/stretch limo era, this was pretty damned cool. And we all got to wear fancy dress (there wasn't time to change...).

When the council finally cottoned on that they might be able to make money out of a professional pantomime, we found ourselves without a gig so mum and dad simply re-designed the existing productions and took the show on the road, visiting residential homes and village halls, taking panto to the masses (or at least those sections of the masses for whom getting in to the rival panto at the Hazlitt was a bus-ride away). 

After a few years, we realised that those people who'd taken the kids to the panto in December were ready to submit themselves to another round of it in January (when, let's face it, there's not much else to do), so we returned to the Hazllitt after the pro show had finished. Mum and dad continued to put on shows until their retirement, at which point the costumes were given away to other local groups and they moved to Devon.... where they proceeded to join a choir and carried on doing performances well into their 80s, when they finally decided to call it a day.

And as for the camel? That was me aged about five. Like all good amateur drama groups, we had a pantomime cow (stage name: Christabelle) and a camel whose name was Phyllis. One day the gas man came to read the meter and I announced "There's a camel in our cellar." "Yes, dear" he said indulgently, only to emerge from the cellar having read the meter and said to mum "She's right, there is a camel in your cellar." Grown-ups, eh? They don't believe a word you say.

It was an odd childhood....

Friday, 25 May 2018

Scattered Black and Whites...

Nearly two years after their deaths, I am still going through my parents' many photographs. Dad was a keen amateur photographer and did his own black and white processing, so there are hundreds of images to sort through. Today I found a couple of a family holiday in the late 1960's. They say every picture tells a story... 

The cute little moppet in the ill-fitting bathing costume, sunhat and cardigan(!) is me, seen here with mum and our (t)rusty old Austin A35 van. You'll notice the CalorGaz bottle and cooker on the grass, along with a 1 gallon water carrier and assorted items lying around the place. This was the morning after the night before.

We had been staying in Devon for a couple of days and then broke camp and headed for a campsite near Looe, in Cornwall. As we took the tent down it began spitting with rain.

By the time we reached Cornwall it was raining very hard and getting dark, so dad pitched the tent in the only space he could find available and mum tried to organise some food for two small, tired, hungry girls. The rain kept on coming and when the gas bottle floated out from behind the cooker, dad realised that a) pitching the tent at the bottom of a field was probably not the best idea and b) that it was time to evacuate!

My sister and I were put in the van to try and keep dry, along with two bowls of tinned spaghetti, our makeshift tea. Mum and dad tried to salvage our luggage and bedding and get it back into the van. The rain carried on into the night, until it looked as if the van was going to get bogged down in the mud. At this stage, a family with a caravan pitched higher up the site came over to offer assistance. The teenage sons were offering help to stranded campers and their parents asked if my sister and I wanted to come and sleep in the dry in the caravan - I said yes, but my sister wanted to stay with mum. I repaid this kindness by keeping them awake all night telling them that yetis are really very shy creatures and not at all like the nasty ones on Doctor Who!

Eventually, dad decided that he had to move the car to higher ground - by this time his clothes were soaked and he was dressed only in a towel round his waist. He got in the car and went to put his foot on the clutch, but instead put it into a bowl of cold spaghetti which one of us had failed to eat.

The next morning the rain had passed and the day dawned bright and breezy; amazingly, by mid-day, everything was dry and ordered and dad finally lay down in the tent to get some rest. Just as he dozed off, he was aware of some movement and opened his eyes to see the van rolling downhill towards him...

I had got into the van to get my colouring book and crayons and in doing so had trodden on the handbrake, thus releasing it. Fortunately there was a 5 gallon water carrier lying on the ground and the van rolled into this and to a stop. This is me shortly thereafter, with said colouring book and not a care in the world, least of all having 
nearly killed my father.

I'm guessing from the position of the van parked safely next to the tent in the earlier picture that it was taken after this event. The L-plate was for mum. She was a fine driver - dad used to sit quite happily in the passenger seat while she negotiated the winding Cornish country lanes. Sadly, this competence deserted her in test conditions and she never did get a full licence.

I don't remember what we did for the rest of that holiday. A lot of people would never have gone camping again, but mum and dad continued to do it for another 25 years. Eventually they stopped dividing the holiday between Devon and Cornwall and settled on the tiny but lovely village of Strete, near Dartmouth, where we spent many happy childhood holidays, including the long, hot Summer of 1976, when the campsite threw up dust whenever a car drove in or out and the skyline was dotted with hillfires.

Me in '76: my propensity for stupid hats remained undiminished

And it is here that their ashes are scattered, in a place that meant the world to them - "Who needs foreign holidays" my dad would say, "when you have views like this?"

[It should be noted that they never went abroad, so really didn't have anything to compare "this" to, but I take his point - it's a lovely bit of the country.]

Mindful of these events, though, when we go on holiday we hire a cottage!

Post Script:

The bowls with the cold spaghetti in them? These!

 I found them while clearing the house and brought them home with me to use for gardening. I couldn't just throw them out, could I?

Wednesday, 7 March 2018

Miscellaneous Items with No Better Home

A tweet last night about odd things older relatives store prompted me to share a picture of a file I found while clearing my parents's house:

This got me thinking about the other oddities we found. My late parents were inveterate hoarders - possibly something to do with being the wartime generation that couldn't afford to just throw things away, but not entirely....

Mum always despaired of the unnamed, dis-assembled pieces of mechanical detritus ("little iron dingbats" as she called them) which dad would bring into the house and then leave on the arm of his armchair, the coffee table, etc. They ran a dancing school and amateur theatre group (for a fuller picture of them, click here), and we lived 'above the shop' so space was a bit limited and our family Christmases tended to be a race against time to tidy away all the costumes before Father Christmas arrived!

When they retired, they converted the house back to a conventional 4 bedroomed house in anticipation of their retirement to Devon. When the time came to move, I was advised to take a trip home to pick up anything that belonged to me that I'd not already collected. We were in the process of buying our own house, too, so it was the perfect time to collect my dolls house (!) and some furniture they no longer wanted. I distinctly remember a conversation with dad which went something along the lines of:

"We're having a good old clear out, as we can't take all this to Devon and it will be less for you to sort through when we die."

This was in 1993. They did multiple trips to the local tip, donated all their costumes to local groups, and off they went to set up their new, streamlined home.

Fast forward to 2012. They were getting on a bit now, and no longer the active 60-somethings who'd moved in. Dad's tendency to stockpile bits of timber (when they bought a new sofa, rather than send the old one to the tip he stripped it down and kept all the component parts, "just in case.") and mum's accumulation of fabric, flower-arranging kit and teddy bears (a late-onset obsession) meant their house was full to bursting. Down for a week over the Easter holidays with the grandchildren, I volunteered to clear out dad's workshop, which was looking like this:

Beneath that lot you can just make out mum's old bureau and a barbers' chair, several sets of tools (dad's, his dad's) the number plate to a long-crushed Vauxhall Cavalier, the strimmer which broke several years before and which he'd attempted a repair with Araldite (as a child, I thought the whole world was held together with this). 

Reader, it took me a week to clear it. 

Fortunately, I had the foresight to catalogue what I found, so I can now treat you to the highlights. Bear in mind, most of these had been transported 250 miles across country in order to sit there for 20 years:

This was a vacuum cleaner which he'd kept because it had an attachment which converted it into a paint sprayer for decorating. It plugged into the light socket. Last used: 1968

A broken mug. To be fair, there is a story to this. We painted panto scenery in the cellar, and there was a hatch in the floor through which flats were lifted and dropped back in. Dad and a friend were painting in the cellar with the hatch open and my sister brought them both a cup of coffee. "Where do you want it?" she asked. "Oh just bring it in" they said, so she backed in through the door in plunged straight down the hatch. Luckily, heavily-painted hessian broke her fall. And the mug (above).

"Why on earth did you keep this?" I asked. "I always intended to make it into a novelty lamp for your sister." he said.

I have no idea of the provenance of this, but it's older than me and probably a fire risk.

An Oxo tin full of sash pulleys. The house was fully double glazed in uPVC.

Three light bulbs he rescued from a skip when his office was refurbished (he did a lot of skip-cycling). They are oversized, screw-thread 200w bulbs that didn't fit any light fittings we either owned or were aware of, at the old house or this one. Again, transported across country.

A box full of dowel rods, "just in case". The yellow ones are from my cot.

This is the other end of the workshop, after I'd cleared it so he could get to his circular saw bench. As I said at the time, "pondering the wisdom of an 82 year old using a circular saw, but let's park that for now..." 

Note also the one spare toilet seat we let him keep of the five he had stored there, "just in case"; the bathroom cabinet from the old house; a home-made light box and a set of plywood circles, purpose unknown; and my grandmother's white stick (she died in 1976).

A wooden box, containing.... stuff. "You can't throw that out, it belonged to Uncle Bert" - this was the man who sold my parents their old home. He wasn't an uncle, but some kind of family friend of my mother's. I left it there - I'm not heartless!

This was a home made inspection lamp, fashioned out of a 'Party 7'-style beer can. "It's only a bit illegal" he said."It's not earthed."

A dolls' wardrobe, given to me by a family friend who is now a grandmother herself. Not sure how/why it made the trip to Retirementland.

Reclaimed window glass..... yes, you guessed, "just in case"

The ladder to our childhood bunk beds, long since replaced with new bunk beds (with an integral ladder) for when the grandchildren come to stay.

My first record player, a very old Garrard deck which dad replaced with a newer one in 1973.

A Gestetner duplicator, the photocopier of its day, which used a wax-coated stencil onto which panto scripts were typed and reproduced using a horribly sticky ink. Making corrections was very difficult, though, so on one occasion Prince Charming declared that "Cinderella shall be my bridge!"

Oh, and there were these in the bathroom cabinet. Corfe's the Chemist had ceased trading before I was born.

At the end of the week, I had the workshop looking like this:

Emboldened, the following year I cleared the attic (well, I needed something to keep me busy while the Royal Wedding was on). Upholstery, old bank statements and the five spare kettles that were stored up there. And the next year, my daughter and I redecorated their bedroom, taking the opportunity to clear a few of the bags full of carrier bags, etc, that were in the cupboards.

And then, in 2016, everything changed. In February, dad was diagnosed with terminal cancer and as his health deteriorated, we had to make adjustments to the house to accommodate his increasing frailty and lack of mobility (Note: don't think just because you future-proof your home by installing a stairlift that old age won't defeat you - eventually, just getting on and off the stairlift is a challenge). As a result, my sister and I had to empty their dining room/study to make room for two beds. Part of the clearance included finding the file that prompted this post, but also some other gems. 

Why, for instance, was his map of all the doodlebugs which fell on Kent in WII stored next to the dishwasher instructions?

His annotated copies of some promotional videos:

And with this over-taping, I swear he was just trolling us...

Sadly, both mum and dad died within a few days of each other and once their joint funeral was over, my sister and I had to clear the house. Despite the clear-out before they retired and my sporadic life laundries over the years, there was still so much to do. My sister's trips to the tip were so frequent that the staff honestly thought she was identical twins! Every utility bill, including the gas bill for the year before they left the old house. Details of every car he'd ever owned. The full pupil registers and exam reports of mum's dancing school from 1948-1992, and the books, the books...

We still have most of these and more still in boxes, waiting to be sorted. We are both book hoarders too, so we now have four people's libraries in the house. Mum and dad's aren't in great condition - mum tended to use paperbacks as coasters - but I don't want them being pulped just because a charity shop can't shift them. We may be e-Baying these for years....

Other items captured for posterity include:

"Seriously damaged. Cannot repair" (but still kept).

Bought for my A level Graphics course in 1979... 

From left to right - dad's 1940s edition of Pigeon Post (bought for him by his elder brother); my rather more battered 1970s edition; the mug I bought him which he kept especially for hot chocolate.

Mum's barrel bag - very modish in the 1950s and it fascinated me when I was little. Not sure I'll ever use it, though.

And finally, I found a swatch of the wallpaper from our childhood bedroom, which stayed up, much to my chagrin, until I was 14.

And now the house and its clutter has gone, and I really need to start sorting things out here so my children don't have exactly the same thing to deal with when the time comes. These were all small, inconsequential objects but contain so many memories of my parents, and the daft-ness of some of them is really evocative of the people they were. As memorials go, this is a fine way to remember them.

[With thanks to @rhodri for giving me the idea.]

Saturday, 3 February 2018

Let's have a heated debate....

Back in the late 80s I went to Manchester University as a mature student, and in Freshers' Week I went to a cheese and wine social at the university film society. A momentous decision as it turned out, as I met my partner there and 30 years later we are both still in Manchester, with a son studying A level Film (about whom, more later).

At that time, FilmSoc was a bit nerdy and bloke-ish, but we were a pretty professional bunch for a student society. We showed 5 films a week (from obscure world cinema to recent blockbusters) on industry-standard 35mm projectors. This meant that we needed a team of volunteer projectionists, all of whom needed training. When I joined, their one female projectionist had just graduated and what was left was a bunch of male (mostly) science undergraduates sacrificing their degrees to the needs of the society. Originally, I'd gone along with an idea of writing film reviews, like a good little arts student, but I signed up as a trainee projectionist because it looked like fun. 

Now this was real projecting, not just pressing 'play' on a video recorder. It took several weeks of training and supervision before a trainee was let loose on a live screening. If it goes wrong swapping between projectors (a changeover) the screen goes dark (or, worse still, the melty fireball of doom appears on the screen); if you lace the film up incorrectly the film appears 'out of rack' (the black bar between frames appears in the middle of the picture, with the bottom of one frame and the top of the next). All of which incurs the derision of your audience and is best avoided.

A couple of weeks into the Autumn Term a university women's group approached us to ask if we could put on a women-only screening of Desert Hearts, which had been released a couple of years earlier but not widely shown (this was before the age of the multiplex and even in Manchester there weren't that many screens). We agreed and our Chair, a lovely gentle man who was an expert projectionist after three years doing the job, went to discuss the screening with them. Except he didn't. Not only was he prohibited from entering the Women's Office in the Union building, he had to stand at the end of the corridor to have the discussion. 

The women-only screening, he was told, must have a female projectionist and there were to be no men present in the projection box or the Film Society office behind it. He explained that at the time (only a few weeks into the academic year) the society had no women projectionists, but this was apparently irrelevant. I had done about 2 weeks' training, and could just about lace up a projector and do a changeover, but I'd only ever done it as an exercise and was still nowhere near screening a whole film, even supervised. However, I was the least worst option, and I think a compromise was reached that a more qualified male projectionist could talk to me through the projection box door if there was a problem, but could not come in!

I did it. I managed to show a whole 5 reels without mishap, but it was a petrifying experience and I've still never watched Desert Hearts, but the women's group got its safe space screening, albeit a pretty ropey one. I hope they enjoyed it. I remember thinking at the time (maybe because I'd already had several years out in the real world beyond student politics) that this kind of exclusionary feminism was a bit daft and potentially harmful, something which has come into stark relief over the last few weeks. I've never really enjoyed women only events and don't join women only organisations. I'm not convinced we can smash the patriarchy by removing ourselves from engaging with men. Confront misogyny, certainly, but I would rather come from a position of inclusive feminism. Which brings me to that crowdfunder.

Whatever the arguments about gender self-identification and all-women shortlists, the actions of some of the proponents of this GoFundMe appeal have been completely unacceptable. Whatever pretence they might make at wanting a civilised debate are undermined by the vile comments made by some of its supporters. Dead-naming and deliberately using the wrong pronouns, using insults such as 'dicksplash' and 'chicks with dicks' is if nothing else provocative and downright bloody rude. And when you state "any left-over funds will go to fight against self-id", you've pretty much stated your debating position. 

It's not as if all-women shortlists haven't been used in the past as a mechanism for keeping un-favoured male candidates out of a selection process, so forgive me if I don't see them as some kind of holy grail. If you want to increase representation, you can determine a shortlist for a particular group (we had a recent BAME-only shortlist locally); increasingly this is probably the direction the Labour Party should be moving in. That's a debate; throwing insults at trans women is not.

I've found myself alienated recently from women I had previously considered comrades; this pains me, but I really won't be associated with this kind of intolerant behaviour in the name of feminism. The same women would rail against hate speech for any other minority group, but for some reason trans women are legitimate targets. Women who have rightly fought against misogyny in the Labour Party are now behaving in the same way as those misogynists. 

Encouragingly, though, this appears to be a minority view, and many more people have been supportive of trans rights than have signed up to this campaign. I'm glad, because I have to declare an interest here. My son, that A level Film student I mentioned, is trans. That's not something you're really prepared for as a parent and, yes, it does challenge your feminist views, but ultimately your duty as a parent is to love and support your child unconditionally. I've been told by certain feminists that "it's a phase" or that he's "just a butch lesbian" * but, to be honest, it's looking like a pretty permanent phase, so he (and therefore trans women) will have my full support in this "debate." It wasn't always an easy journey, especially when he first came out, but I've learned a lot and come to respect him for being true to himself. And, given how many of his friends have been disowned or ridiculed by their families, I want him to know that we will always support him.

It would seem that trans men don't figure much in the exclusionary feminist worldview, but I have friends with trans daughters and as far as I'm concerned, it's one fight - trans rights really are human rights. I'm still learning, and I don't always get it right, but at least I'm not getting it completely wrong.

As my son said recently, "Yeah, mum, you used to be a bit of a TERF, but you're better now."

I'm happy with that.

*which conveniently overlooks his preference for men...

Tuesday, 3 October 2017

Mr Cellophane

So, we're having problems with M's education and social care again. Nothing new there; it's been happening pretty much all her life. Except that she's now an adult and we're running into the brick wall that is adult social care, where you only count if you're actually currently suicidal (and not always then).

Back in the summer, after she had been admitted to hospital due to an attempt on her own life (which put paid to the two GCSE's she was due to sit), we contacted our local authority requesting an adult social care/mental health assessment, as we didn't feel we could keep her safe. When she turned 18, we were told "don't bother applying for a social care assessment, she won't meet the threshold." Reading up on it since, this seems a bit contrary to the Care Act, which says that local authorities should be proactive in offering assessments to people on the autistic spectrum, but we didn't question it, assuming that these were professionals who knew what they were talking about.

She was given a mental health assessment, carried out by a very pleasant and empathetic person whose train of thought was, sadly, interrupted by the realisation that she would have to go and move her car around the hospital car park mid- appointment, due to the Trust not providing all-shift parking for its own staff. She was sympathetic, but admitted M was unlikely to get much help, given that she was no longer at immediate risk of harm to herself or others (on the day of the appointment, at least). As with the RAID team in the hospital, she was able to offer useful phone numbers (no use at all for an autistic person who would no more phone a helpline than break the land speed record), referrals for counselling (4-6 month waiting lists) and a referral for a carers' assessment for my partner, her primary carer (we're still waiting on that, too - we anticipate more helpline numbers and offers of coffee mornings). 

As to a social care assessment, nothing. "We should really be talking to her rather than you, as she's over eighteen." Well, yes, but she won't talk to a stranger, especially over the phone, so she won't seek help herself even when she needs it. So good luck with that...

And so we tried to get her back into  some kind of routine. Her anti-depressants (which she'd been on for several years) were reviewed and amended and we tried to get her back on an even keel. The end of the academic year was fraught, although she managed to complete enough work to gain her Level 1 BTEC course, in preparation for the L2 Art & Design course she had been wanting to study for several years.  

Then we had a letter from Transport for Greater Manchester regarding the renewal of her travel pass. We duly filled in the application and returned it, only to have it refused on the grounds that "autism is not a learning disability" so she no longer qualified for it. I phoned the local authority and was told that this was because she was now an adult, and no longer came under Children's Services. We approached TfGM, who helpfully suggested applying on the grounds of having been refused a driving licence (although, to be fair, she would probably have qualified under the mental health criteria as well) and this was granted just before the Autumn Term began. With this pass she only qualified for free travel after 9.30am, a problem if her timetable included 9am starts, but better than nothing. As it turns out, we'd been wrongly informed; her EHC Plan means she is still entitled to the free travel she has had for the rest of her post-16 education, so we've now reapplied for the pass she should have had at the start of term.

In the meantime, I had taken some advice and was advised that her EHC Plan had some notable gaps in provision on the non-educational care needs and since her mental health had deteriorated sharply since the Plan was implemented in October 2016, we were advised to request an emergency statutory annual review. I wrote to the local authority on 2 September to formally request this.

Back at college enrolment, she discovered that she would not be allowed to sign up for the L2 course as she did not have English GCSE (the one she missed due to being an in-patient, hooked up to a drip) and was put on a L1 Art & Design course. Then she was told that the single Art & Design course was not running due to low numbers and that she would be doing a mixture of art, media and other disciplines. Having been put on a different L1 course last year, due to the Art & Design not running, she now found herself studying another course she didn't want to do, at a lower level than she thought she would be studying at. Her timetable didn't arrive before the beginning of term and rooms changed from day to day. Can anyone see why this might unsettle someone on the spectrum?

As a result, her anxiety went through the roof again and and she was pretty difficult to deal with, swearing at staff and spending half an hour hanging around the doorway trying to get into class (thresholds have always been an issue for her, but with careful management this can be overcome). Eventually, we were called in to a meeting, where it was proposed she should sign a behaviour contract; she declined to do so with 4 adults and her parents all sat around the table looking at her, so she was given some time to go away and think about it. 

As with most teenagers tasked with decision-making, she procrastinated. Last Monday she got a letter fro college stating that as she had not responded they would be starting withdrawal. This resulted in a frantic phone call to me at work (her carer had rashly though he could take half an hour off to go food shopping without incident) with M in floods of tears. I contacted the college straight away to see if there was any way to avoid this. I was assured someone would contact us. No-one did, so the next day, my partner contacted the college and was assured that someone would get back to him by the end of the day. That was a week ago, and despite us chasing twice since then, we have had no contact from anyone.

Similarly, the local authority has not contacted us regarding her annual review. No reply, not even an acknowledgement of our request. I worked for this local authority for 17 years and during my time there we had strictly-enforced service standards regarding response times to the public. 3 weeks' silence, despite the intervention of IASS (Parent Partnership as was) and a local councillor, was not part of the service standard then. Budget cuts, staff shortages and increased workloads notwithstanding, failing to even acknowledge a request for a statutory procedure is pretty poor by any standards.

We are beginning to think we are invisible, hence the title of this post. A vulnerable young person, at risk of self-harm has been pretty much abandoned, and her parents are bearing the brunt of her frustration. She is, as everyone keeps pointing out, an adult. We can't keep her locked in the house, but our hearts are in our mouths every time she announces she's "going out". It seems the parents of adults with autism are fine for fulfilling the state's responsibility for care (until the point where we become too decrepit to cope) but we don't warrant a reply to our very polite (for now) emails asking for help.

You'll be pleased to learn though, that the local authority's self-assessment of its Autism Strategy is all "Green". So that's OK.

Monday, 29 May 2017

Let's not let dead cats decide this election.

The rest of the Tory election campaign will be headed up by Lynton Crosby - a very unpleasant, unelected Australian 'strategist' with some unanswered questions about his tax arrangements, who delights in using 'dead cat' tactics wherever he can and is very effective at making nasty and incompetent people (Cameron, anyone?) look good. 

Please don't be fooled - May will not deliver a good (or possibly any) Brexit deal but she will continue to hammer the poor, the disabled and anyone other than the wealthy, despite all her faux concern for "ordinary hardworking people". And the NHS will continue to be run into the ground to soften us up for a US-style insurance system (look up how many Tory politicians have a financial interest in private healthcare companies if you don't believe me). 

She is a weak PM (and was a rubbish Home Sec if you look back at her record) who crumbles and then hides at the first sign of adversity. And if Brexit is what you're worried about, look at her negotiating team - the dilettante Boris Johnson, the security risk Liam Fox and David Davis, who really doesn't seem to know what he's doing so far. Angela Merkel has already given up on us, seeing the UK as Trump's ally! If we have to have Brexit (and I voted Remain, so I'm less than happy about it) then we at least need a decent settlement, and we won't get that with this bunch. 

I'm old enough to remember when Tory governments had Big Beasts - you may have disagreed with them and not liked them but at least there was a level of competence. Instead we have people like First Strike Fallon, who can barely control a tv interview, let alone our national security. 

And then there is what they're not telling us. There should have been an announcement on the state pension age due out before the election, but they're holding it back until afterwards - from which we can probably deduce that it's going to be bad news for us and we'll all have to work even longer than the current 66/67/68. 

So yes, you may not like Corbyn (although it's funny how many people have changed their mind now they've seen more of him in action) but really - does the Conservative Party really strike you as Strong and Stable after the last few weeks? Compare that with the calm response Corbyn has shown over two years of vilification from a hostile press (and large chunks of the PLP). If there's one thing he doesn't do, it's panic when things go pear-shaped. Unlike May. 

And before anyone starts with that "magic money tree" bollocks, there is no Magic Money Tree; what there is is a costed manifesto - and that's something else that's missing from the Conservatives. 

So if you live in a marginal, get out and vote - preferably for Labour, but tactically if that works better where you are. The collapse of the UKIP and LibDem vote means this is the most 2-party fight in a generation, but there are some marginal Tory seats that can be overturned - in some cases by a few hundred votes. And if you live in a safe seat, vote to keep the vote share high (and start campaigning for voting reform!) 

If you're young, follow up on that phenomenal registration surge and actually turn up on the day. 

If you're older, consider what old age and frailty will be like with no NHS, and vote for a party that won't allow it to be taken away from us. 

If you're poor, unemployed, disabled vote to stop being demonised by your own government. 

If you're not poor, unemployed, disabled have a bit of compassion for your fellow citizens and vote to stop them being demonised by your government. 

If you have children, vote for a party that won't starve schools of funding to levels not seen in a generation while reintroducing unjustified and un-evidenced educational segregation through grammar schools. 

So in conclusion, vote. Obviously, I'd like you to vote Labour, but in reality vote for anyone who can get rid of this shower of unpleasant incompetents. And remember, what you see from them over the rest of the campaign will be Crosby, not May.

Monday, 15 May 2017

A year's unpaid leave, you say? How generous!

Twenty one years ago, my partner and I both worked in the public sector, in modest but secure jobs. Our parents were enjoying well-earned retirements and were, in the main, fit and healthy.

Nineteen years ago, our first child was born with a rare neurological condition which meant that much of her young life was taken up with medical appointments with a range of medical professionals. After 6 month's maternity leave (the maximum I was allowed or could afford), I went back to work full time, and my partner and I managed these appointments between us, thanks in part to decent terms and conditions (good annual leave entitlement and flexi time). Our daughter had a place at a council-run SureStart Centre, with exemplary support from qualified, experienced childcare workers.

From the day she started school, there were clearly problems with her behaviour and by Year 1 she already had a statement of Special Educational Needs and at one point had 200% 1:1 support in class. At 9, she was additionally diagnosed with autism, which helped inasmuch as school staff at last knew what they were dealing with, but didn't make it any easier to manage. We were no strangers to exclusions, and each of those meant one of us taking time off from work. We will be forever grateful to those managers who allowed us to work from home at short notice and even, on some occasions, allowed us to bring her to work with us!

In 2007, my professional life took a hit when the project I had been working on with the council was put out to national contract, and I was TUPE'd to the private sector (thanks, New Labour). Now, I was working in a culture where I dreaded having to ask for time off, for fear of it being seen as a sign of weakness. Much of the "please come and take her home" requests then fell to my partner, with such frequency that he came to dread the school's number coming up on his phone. 

The following year, my daughter suffered sudden and unexpected sight loss in one eye and needed emergency surgery over in Liverpool and at least a week's recovery time. For an 10 year old autistic child, who needed to remain still and calm during her recovery, I was given 3 days' compassionate leave. No "take what you need and we'll sort it out on your return" but the maximum (grudging) allowance with an instruction to work at home for the rest of the time. Perhaps unsurprisingly, this decision was made with by a male manager with no children....

A year later, I was offered a voluntary severance package, which I accepted with almost indecent haste. My daughter was about to transfer to high school, and this gave me the opportunity to take a year out (as I thought) to get her settled in. My partner carried on working full time, and by living carefully, I made the severance money (about a year's salary) last a year and a half. At that point, we applied for DLA. Although she would probably have been entitled to it for some years, we both felt that we had been earning reasonable salaries and that we could absorb the 'additional costs of disability' that DLA covered. (We were earning substantially less than David Cameron, who did claim DLA for his son, but let's not go there).

We battled on. My daughter's behaviour continued to challenge and became more erratic as she entered the hormonally-challenging teenage years, resulting in more exclusions and eventually a spectacular crash out of mainstream schooling and a hellish (for both of us) 6 month spell at home while the local authority tried to find a place at the over-subscribed special school. My 'year out' didn't look like coming to an end any time soon, as although she eventually did get back into school (it took Sir Gerald Kaufman's intervention to get it resolved), I still needed to be on hand during the day. And then my partner fell foul of the local authority job cuts imposed on council's by Coalition austerity. He had to make a decision - take voluntary severance or hang in there and hope that the next round of cuts wouldn't include compulsory redundancy. We had a talk - I had been a full time carer for nearly five years, and the effects on my wellbeing and mental health weren't good. We decided to take a risk - he would take the severance package and I would look for work. 

Things were a bit ropey for a while (especially with the continued Coalition assault on social security benefits), but eventually I found a part time (well, 30 hpw, so almost full time) job. The salary wasn't great - about half what I'd been on before, but it was a route back into the workplace after a 5 year absence in my 40s - never a good time to lose skills and a track record!

By now, our household income was about a quarter what it had been in 2007, and we were held together by goodwill and tax credits. My partner now became our daughter's full time carer as she moved on from school to college. things should have been improving, but this was a troubled time for her (in part down to the college's actions) and it became clear that it would not be possible for him to find part time work to augment the massive £60 a week Carers Allowance he got for being permanently 'on call' for the next crisis (and there always is a next crisis). 

And then my parents became ill. My mother was 90, with the multiple ailments of old age and the beginnings of dementia, and my 86 year old father (not in the best physical health himself) was her carer. I had encouraged them to apply for Attendance Allowance and we were all (pleasantly) surprised when they were both awarded higher rate; indicating how much we just absorb caring into our daily lives without appreciating quite how bad things might be getting. In February of 2016, my father was given a terminal cancer diagnosis, with a suggestion from his GP that he should probably put his affairs in order.

And so our lives shifted again. Our daughter was still struggling with college, but I had to leave my partner to deal with that (and our other child doing GCSEs) while I went to work and then did a 500 mile round trip every fortnight to my parents' house. Trips to the hospital, a weekend where my sister and I turned their dining room into a downstairs bedroom, setting up care plans, talking to the hospice staff, making sure their bills got paid and, as dad got weaker, discussing mum's inevitable need for residential care (something neither of them wanted). I called them nightly from home during the week and the calls become less and less coherent as dad's morphine levels rose. Luckily, we had excellent care workers coming in four times a day for each of them, but towards the end I was getting panicky phone calls as their grip on time deserted them. My sister lived closer, so was able to call in on them, but her ongoing health condition meant that she was physically and mentally exhausted and was limited in what support she could offer without making herself worse. And even though I worked in the field of adult social care, it was still really hard work navigating the many and various departments and people involved in their care, from the excellent carers to the unhelpful social worker; hospital OTs, community OTs, hospice staff, district nurses, pharmacists, the GP, the local authority ASC department. It was a full time job, but at least I had the income from my day job, all £16,000 a year of it, to hold the family together back home.

One Friday in mid-June, mum was taken into hospital, and I got a call at work from my sister to say that mum wasn't expected to come out again, so maybe I had better come down straight away (I had been planning to go down that evening anyway). On the same day, dad was admitted to a different hospital with chest and urinary infections which had made him very poorly. I did the 5 hour drive and arrived very late at night (the M6/M5 traffic on a Friday could mean journey times of up to 6 hours). The hospital(s) hadn't phoned to tell us of any deterioration so we got some sleep and intended to go and see mum as soon as visiting time came round. As it happened, we were on our way there when the hospital rang to say she had taken a turn for the worse, and by the time we arrived she had already died. 

We then had to go to dad and break the news to him. To be honest, we both thought, looking at him, that he was about to join her that day, so I called my partner and suggested he and my son (who had just finished his last GCSE) come down by train. The following day, we were all together as a family, and dad held court from his bed - a hospice bed within the local community hospital - and said his goodbyes. Physically frail and in pain, his mind (now the urinary infection was being treated) as sharp as ever, and he was lucid and funny. We said our goodbyes, thinking this might be the last time we saw him.

On the Monday, I phoned work and explained the situation and was told to take whatever time I needed. In fact, dad lived another ten days after mum's death, and I spent a week sleeping on my sister's sofa and visiting him as often as possible (save for a quick, 24 hour round trip to vote in the referendum, having not had time to arrange a postal or proxy vote). As I was packing my bags to go home at the weekend, the hospital phoned to say he'd taken a turn for the worse, so another panicked call to work who (bless them) told me not to worry about it and to take the time I needed. In the end, dad died peacefully and pain-free on 28th June. My sister and I spent the rest of that week making arrangements for a joint funeral and initiating the legal processes as their executors, and I then returned home for a well-earned rest at work before travelling down again for the funeral.

There followed another few months of estate-sorting and house-clearing, involving more weekend trips and, finally, a large  rental van to bring stuff back home to sort and we finally closed the door on their home of 23 years in October.

In the meantime, we had managed to find our daughter another college place and get our son into sixth form college (he passed his GCSEs, if you were wondering). We are still caring for our daughter (we probably always will be, given the nature of her disability) and now my mother in law is showing the first signs of dementia, so it looks like the cycle is about to start again.

All of which goes to demonstrate that a new "worker's right" to twelve months' unpaid care leave is utterly useless - most of us cannot afford to do without pay for a year, even if our jobs are held open for us, and so we mostly just juggle our caring responsibilities as best we can. The best employers already make accommodations for their workforce; the worst don't now and will do their best not to in the future (and to be fair to them, why should employers subsidise the care industry by effectively seconding their employees to it for a year?). My partner and I have both, at various times, given up work in order to care for a relative, but it was a decision forced on us by other circumstances and we did at least have the paltry £60 a week the government deems sufficient to pay carers. Neither of us could really "afford" to give up work and it's been damned hard work coping on that much of an income reduction.

In reality, those who can afford to take up the generous offer of unpaid leave will, by and large, have parents with savings of their own; in other words, the already-comfortable middle classes. In essence, this policy will end up (by accident or design) being more about preserving inheritances than truly solving the care crisis.

And since when did the Conservatives ever really care about Workers' Rights?