Comprehension Dawns

A Year

2009-06-22T01:32:00.003Z

I got bored of blogging, about... well, exactly one year ago today. I was stuck in a nursing home, desperately unhappy with no prospect of getting out in the forseeable future, no nearby friends, no privacy, dignity, or independance.

I always said I'd rather die than end up in a nursing home.

When it came down to it, I couldn't do anything about either. There are no words for how horrific it is to know that you've no choice at all in the matter - a treatment more regularly doled out to those convicted of some horrible crime.

So, what about now?

I'm 23, I live in Hulme with my lovely housemate ScaryCyclist and three cats.

I use an electric wheelchair because I have a severe, progressive disability caused by a fairly rare genetic condition. Technically I was born with it but the first time it would have been even remotely possible for anyone but a major expert to spot it, I was 12. As it is it wasn't spotted until I was 20 - something of a shame as a lot of pain, expense and heartache could have been saved if some appropriately trained person had spotted it.

I also have a tube for getting liquids into me and another one for getting them out again.

I'm getting more and more technology dependant and am occasionally startled by the realisation that mostly I don't really care any more. Not that I don't care about me, but I don't think there's anything my body could throw at me now that'd really surprise me.

I keep trying to finish my degree and failing miserably. This is a source of some distress and self-disgust and I really need to get things moving and get it done. Amongst my delight at Muso Sister's imminent qualification as a secondary school music teacher, via Cardiff Uni and Homerton College Cambridge, is real anger with myself for not managing so much as an undergraduate degree in the time that my two-years-younger sibling has taken to acquire a BMus and a PGCE. I hate myself for this, in full awareness that hating oneself is unlikely to be very productive.

I need to overhaul my blog, its template, links and the rest so I should probably stop wittering now and get on with it.

To conclude: have some extraordinarily beautiful slugs.

Whales again.

2008-06-21T21:02:00.002Z

Okay, look. If you want to know how big the heart of any given whale is, you really need to do better Google searches than 'whale heart'. Pick a species, for starters. Better yet, go to a library and find a marine biology book. You've got much better chances of turning up actual fact that way. Honestly.

It took me about five seconds to find this extremely informative (if slightly commercial!) page listing the vital statistics of a pretty comprehensive selection of cetaceans. Go there instead. And do your homework better 'cos I'm not doing it for you next time.

I've had a very cross couple of weeks 'cos a measly piece of welding on the footplate of my powerchair broke, rendering me - er - legless. Effectively, anyway. So I'm back in the manual chair, which is immensely frustrating: there are nowhere [i]near[/i] enough pairs of hands here to enable decent human-assisted mobility. Should be fixed soon, but it's making the days feel very long indeed. Particularly as Nurse With Cute Puppy (NWCP) is away on holiday, rendering Keyworker Nurse (KN) hopelessly busy and therefore unable to do much keyworkering. I like KN very much but I get very angry sometimes because he wields so much power to improve (or wreck) my quality of life and he doesn't really seem to appreciate how important that makes him in my life.

I watched Turkey effect a pretty spectacular last-minute win over Croatia last night, and now I'm watching Russia do something similar to the Dutch national team. League football always seems a bit pointless but the international stuff kills time reasonably well, in the absence of anything better to watch. Of which speaking, tonight's Doctor Who episode was a real treat. Clearly another second unit production - presumably they filmed this episode and the previous simultaneously to fit the schedule in, as there's almost no overlap of the main cast between the two - but it wasn't half a goodie, although I'm not sure they'll ever top last year's second unit episode, Blink.

I should be more mobile soon - even with a poorly powerchair, as my long-awaited adapted van is soon on the way. I'm not even going to try to describe how much I'm looking forward to it.

Hello! Long time...

2008-06-06T14:45:00.002Z

Well then. It's been a while. I be started university, landed myself in hospital, left university (well, suspended study), and got myself stuck in a nursing home.

Needless to say, I don't like it very much. A few of the staff are brilliant, most are mediocre, and a few absolutely dreadful. I am constantly bored and frustrated, deprived of contact with the outside world and with my peer group, offered no meaningful activity and precious little social interaction. I read books, surf the Internet and listen to music, and try to keep existing and avoid the bullying staff in between visits from friends and family.

It would be so easy for them to improve conditions for the residents here, young and old alike. Staff retreat to a room with a closed door in their break time, residents are left slumped in chairs, in front of the TV if they're lucky but just as likely to be left staring at a wall or out of a window with a view into nothing. Books, magazines and is puzzles exist but are never offered. I've never seen a member of care staff engage a resident in any meaningful activity, the physiotherapist lining people up to paint large terracotta pots in bright primary colours once a fortnight currently being the single group activity happening here. Residents with severe, multiple impairments do not join in.

We did baking, once. Four of us, and one of the cooks came in on his day off. It was brilliant, animated and interesting even only for a few hours. The cake I made wasn't half bad either. Despite our enthusiasm, it seems to have been a one-off. That was weeks ago now.

Eventually, I should get out of here. Nobody seems to want to pay for 36 person-hours of care needed in each 24. Funny that. But that's what I need to live independently, so that's what I'm going to get. It's going to take a long time and a lot of hard work, a lot of fighting to get that. But I will. I cannot spend the rest of my life here.

Annoying news, bad news and sad news.

2007-01-07T17:44:00.000Z

I'd like to wish you lot a happy New Year, Christmas, Hannukah, Winter Solstice and anything else that happened in the last month or so that passed beneath my radar.

~*~

Girl with a one-track mind got rather a lot of media attention, recently - essentially, for having lots of sex and blogging anonymously about it. And then for being 'outed', horribly and intrusively, by someone who thought it might make a story. That, in itself, is unspeakable.

But then, she reveals one of the emails that Nicholas Hellen, the Acting News Editor of the Sunday Times (hopefully not for much longer) sent her. How low can you go? Threats. Intimidation. Bullying, in short. 'Abby' is clearly a strong woman with plenty of support and I'm sure this little post will matter not one jot to her, but I saw the bandwagon and decided to crawl onto it anyway. I wish her all the very best.

~*~

I've got a whole lot more rage at the international press for their coverage of the Ashley X case this week - but I've pretty much said my piece over at Ouch so instead of repeating myself comprehensively I'll just point you there instead. Cutting out a little girl's uterus, and ovaries, and breasts "in case they cause her discomfort later on" is, at the very least, ridiculous. And obscene. And a whole load more words besides.

~*~

Lastly and on a sadder note, one of my littlest blog-friends died this week. Lance was six-and-three-quarters and had Menke's Syndrome. He was a lovely little chap and his parents and baby sister clearly absolutely adored him, and my thoughts are with them now.

~*~

Edited later, to add:
fairsCaPe, an ace poet and mum-blogger to a son with several profound impairments, has cancer and is quite poorly at the moment. She has my strength and good wishes and if anyone's got any spare they might like to lend her theirs, too.

Was someone looking for me?

2006-07-23T10:10:00.000Z

Hello!

With search terms turning up in my visitor stats like "Executive Council of the Greater Manchester Coalition of Disabled People rebecca" and "au "rebecca young"", it looks like someone might be trying to find me.

Well, you succeeded. How can I help?

I haven't been all that active at GMCDP of late; I've just spent nearly 2 and a half weeks in hospital and am woefully behind in all sorts of Executive and Officers business. Ah well, I'll have a decent chance to catch up at the Council Officers meeting on Wednesday. Hopefully, we're setting up a working-group towards an inclusive education campaigning unit at GMCDP, settling our new Admin and Finance workers in (yay!), and generally getting things on track a bit.

I'm looking forward to going on another Cambridge Early Music Summer School this August; it'll be a bit challenging as my stamina for playing is a fair bit down on what it used to be, but it's too good to miss, even if I end up laid out for a week from exhaustion after. What with old friends and new friends and whatnot, I had a fantastic time there last year and I can't wait to get back into Cambridge again - especially as, having been forced out of college to complete the final year of my degree elsewhere, I may not have much access to baroque viola teaching next academic year. Not that I had much this academic year, either, but at least I had some!

I am now teaching, too. I've been teaching on and off, dibs and dabs for years and years, but now I have regular pupils who I have seen weekly for the best part of two terms, planned lessons for them, watched them grow. It's been a big learning experience for me, too, and has led me to the conclusion that teacher training and following my mum into life as a peripatetic violin and viola teacher is as good a career option as any from where I'm sitting.

Right, that's enough blethering for one day. I'm off to dabble in fantasy for a while.

Why hello there.

2006-05-04T22:42:00.000Z

Firstly: to the poor sap who's looking for information on how big a whale's heart is, I'd just like to advise you that you're deeply unlikely to find any useful cetecean information on my blog, and that the size of a whale's heart depends largely on how big the whale is.

Secondly: I seem to have managed to move house. My landline number has changed, as has my address (duh!); mobile and emails remain the same. I'll probably get organised enough to send change-of-address cards at some point but if anyone needs to get in touch with me before then and doesn't already have the new number, please email me. I now have really quite a lot of spare beds. Visitors most welcome!

Thirdly: Actually, there isn't a thirdly. Not a blogworthy one. I have built a whole house's worth of flatpack furniture this week, and it's quite fun. Hope everyone's OK and hearty get-well-soon wishes to BigMamaDoc who's currently in hospital.

I do hope my neighbours have got their nice Staffie puppy back; last I heard it'd escaped.

My BADD entry. With apologies.

2006-05-01T22:37:00.000Z

I was going to write about disablism on a national, nay, global scale today.

I've decided not to.

Then I decided to write about disablism in my own life, but I'm not going to do that either.

I'm going to write about Charlotte Wyatt again, instead.

No I'm not. I am going to write about me.

I'm going to duck and weave and not really write about disablism, though. I'm going to write about inclusion. My inclusion. I reckon inclusion's the opposite of disablism, really. I don't mean just at school - that most well-known desert of segregation and discrimination - but after.
Especially after, for me.

Being included to me means being welcomed and valued and while that contrasts particularly strongly with the kind of overt disablism that saw me sitting swearing at a bus stop outside Oxford Road train station the other week while my bus accelerated away from me, it also comes up pretty sharply against the insipid, pervasive ignorance and negativity that produce a great many equally serious but somewhat less obvious barriers in my life.

The thing is, when you're valued, when you matter to someone, in however tiny a way, your needs magically get met. I spend a lot of my time in an environment that has good physical access, but my access needs aren't just about where wheelchairs can and cannot go. And that's where having friends that know where to find a coffee that comes without unasked-for piped muzak, or will cheerfully make a 10-mile detour so that you can relax on a sofa for a scant 20 minutes before charging off for a rehearsal again, or will risk life and limb fighting a wheelchair that really doesn't want to be folded, or wait out your emergence, gibbering, from bad news and an unpleasant brush with a brace of phlebotomists with nothing more than a smile and half a pizza, come in very important indeed.

It percolates through all of our lives, this inclusiveness. It affects, hugely, those beginning- and end-of-life decisions. I would like to think - to hope - that maybe, just maybe, those all too often heard "I wouldn't like to live like that" or "It would be unfair to put him through that" will gradually be replaced, bit by bit, by seeing how this could work, not just learning but knowing on a deep, primaeval, instinctive level that disability is part of the deal with life, that it's not optional, or avoidable by playing one's prenatal cards right or writing oneself a get-out clause in the event of something drastic happening.

Feeling safe and wanted and welcomed is something truly universal, and all too often people seem to forget it, in their rush to assess (at a glance, in the queue in Withington post office) someone's quality of life. Those poor fools pity me. I pity them - they are so narrow and shallow and ignorant that they're missing out on all sorts of life's wonders and should they through chance or misadventure join the varied, bickering ranks of disabled people, they will be so busy thinking their lives over that they'll miss out on even more.

In my wheelchair, in Manchester and elsewhere I fly and whizz and spin. I make friends jog, run even to keep pace with me. I shoot down ramps and jump up kerbs, rejoicing in daredevil rush-hour dashes across Wilmslow Road and pondering whether I'm fit enough to do the Great Manchester Run yet. (I'm not.) I puff and swear up steep hills and try to trigger the ever-present speed camera going down them. I haven't been on Hampstead Heath in over a year, and it must be nearer five since I last passed through the gates of Highgate Wood. They're my childhood green spaces and members of my family spend a fair old bit of time there, but walking with stick or crutches my range is now less than a hundred metres and so I sit in the house in my visits to London, craving open space and exercise and playing with the computer, too much of a coward to confront the elephant in the living room. I wonder whose disablism is that's really holding me back, there? I suspect it is my own, really, and that's where it's hardest to reach and challenge.

BADD ground zero.
The almighty Sarah's contribution.

Coming Soon: Blogging Against Disablism Day

2006-04-14T22:27:00.000Z

It's about time someone got me to write something. There's lots going on but until it's all a bit calmer I can't really write about it. But there's stuff in the pipeline. Honest.

A whale's heart is as big as a car.

2006-01-21T21:26:00.000Z

Well, I don't think the Thames one's was, what with the whole animal only being a mere 18 feet long and all. Poor sod probably thought it had found some nice quiet inlet to die in and instead got tourists and vets and barges and rather a lot more publicity than a whale is used to.

I did find it quite heartening just how hard everyone was prepared to try and help what it's pretty obvious was, from the start, a terminally buggered animal - let's be clear about this, species that can find their way from one pole to the other in search of the best grub don't take wrong turns inland, as a general rule - and it gave a huge gift just in turning up and being seen and reminding everyone just what exactly we're at stake of losing if we continue to abuse the world's oceans.

Onto other things... today was the Greater Manchester Coalition of Disabled People's AGM, and so as of about three o'clock today, I am now a full member of the Executive Council of said GMCDP. This means I can vote in Executive meetings, and scare city councillors and things. 'Course, I could (and did) scare - ok, meet with - city councillors way back when I was a lowly co-optee, but I still reckon it gives me a bit of a psychological advantage.

Said AGM started at 1pm, but unfortunately I'd got it into my head that it was a morning meeting, and consequently dragged myself out of bed and rolled up at 20 past to a shuttered building, deserted carpark and the sweet siren of a very large alarm bell going off in my head. Oops. I got some quite productive things done in the gap, though - whole bunch of writing for my String Pedagogy portfolio.

In conclusion: My philosophy of teaching is that all my pupils should feel positive about their learning and playing. When lessons end, even if after only a short time, I hope that: the pupil has gained something lasting; I have learnt something from being their teacher; and we are both glad that we were there.

Awww, isn't that nice?

Blonde Jokes

2006-01-08T15:20:00.000Z

Now, I don't usually go for manic forwarding (in fact, 9 times out of 10 they inspire in me only the desire to remove the sender's eyes with a fork) but this really made me laugh a lot.

Merry... Everything?

2005-12-25T22:26:00.000Z

My family celebrated three things today: a rather secular Christmas, a slightly less secular first night of Hannukah, and my splendid young cousin Sam's slightly ill-dated eleventh birthday.

Last year, we didn't have a winter celebration all together - our half of the family went to Devon while others remained in London. This year, however, almost the whole clan came together in the wonderful house owned by my grandparents - the rightmost two older people sat on the bench in that photo - which they share with Helen and Keith (the other two people of that generation in that picture) and have done for getting on for fifty years. My granny and Helen, although not at all related, both arrived in this country in the 30s as German Jewish refugees, attended the same school, and have been friends for what must be getting on for a good 65 years. When they married and began their families it somehow ended up seeming like a good idea to buy a huge house together - so they did. Living as rather close neighbours rather than actually together, they raised 7 kids between them, who together with their spouses now have a total of 14 people of my generation (ish) - in the extremely rare occasion that everyone's present, we have an immediate, joined family of 32. Tonight there were only (?) 27 of us, ranging in age from 80-next-May to 2-in-three-weeks, and although decidedly stressful, it was really rather lovely.

I hope everyone out there is having a happy and peaceful Christmas, Hannukah, Solstice or whatever else there may be to celebrate round this time of year.

Timewasting

2005-11-30T12:16:00.000Z

Thursday; Edited To Add:
Today is World AIDS Day. There are candlelit vigils all over the country, and although for various reasons that I don't fancy discussing publicly I'm not going to one, I am doing rather a lot of thinking tonight. And I have a virtual red ribbon, which can be found by clicking the above linked graphic.

Hope everyone is safe, warm and well and remains so.

Wednesday:
Last Thursday, I went to Liverpool to meet Lady Bracknell and Turtle and Boogaloo Dude (and someone really ought to explain why he's called that sometime, incidentally) and saw Thalidomide: The Musical. It was hilarious and meeting everyone was really cool and... well, Lady Bracknell has done a much better write-up of it than I could, so just go and read hers, OK?

I'm at college, have just had a really great baroque viola lesson, and am killing time before I go back upstairs for some coaching on our Mozart Horn quintet. Probably will sign back on and add more to this later...

Over n out!

Charlotte Wyatt: the Baby Who Lived

2005-10-21T13:14:00.000Z

Charlotte Wyatt is two years old today. Born prematurely at 26 weeks gestation and weighing a pound, she's lived in Portsmouth General Hospital her entire life, and is now - finally - well enough to go home. She would have been a year ago, had an ill-judged move from neonatal unit to paediatric ward not exposed her to an almost-lethal infection that has left her with damage to her brain, lungs and kidneys, resulting in profound learning disability and what was originally thought to be deafblindness - it's now apparent that Charlotte has good hearing and at least some sight.

When she was ten and a half months old, her parents and the doctors started to disagree. Badly. Living in a headbox on 100% oxygen, the medics said Charlotte had, and would always have, no quality of life at all, was likely to die soon, and would gain nothing from being resuscitated or ventilated, should she require it. They went to court. The judge agreed. Charlotte had a death sentence hanging over her. One bad chest infection - for which small, frail babies almost always require some ventilator assistance - and she'd be gone. Everyone assumed one would take her that winter. It didn't.

Charlotte grew and gained weight. She started needing less oxygen. She successfully tried out a mask system to help her breathe, and then nasal cannula. She started tolerating sitting up in a carseat, jumping at loud noises and following bright toys with her eyes. Her parents went back to the judge. He upheld the order - if Charlotte crashed, she was not to be ventilated.

Then, Charlotte got stronger still. She began going on pram rides out into the hospital grounds, spending whole days out of her headbox, learnt to smile, dropped her oxygen requirements below the threshold required to be allowed home. Again, last week, her parents went back to the judge. Today, Charlotte's second birthday, the order has been lifted. She is no longer described as terminally ill. Her consultant has seen her smile - (that took a while, can't imagine why...) and testified to it in court. Just as soon as the family home is organised, Charlotte is leaving Portsmouth Hospital for the last time.

There's a Paypal button at Charlotte's site, to allow wellwishers to speed her journey home by contributing to the cost of her care and equipment, some of which is not likely to be provided by the NHS.

Happy Birthday, Baby Charlotte.

Eeek.

2005-09-29T22:22:00.000Z

This is probably one of the more horrifying things I've ever seen.

Some students turned The Shining into a romantic comedy. Yes, that Shining. I think I might have nightmares...

(rated G for only psychologically scary things)

In other words, I seem to have caught Fresher's Cold (like the Flu only milder) and am doing a reasonable hamster impression. Yergh. Mozart Opera lecture tomorrow morning, lucky lucky me. Least it's with a good lecturer...

Ooo, and for the attention of any other cripbloggers, Stell and I are vaguely contemplating trying to do a Secret Santa this year. Anyone interested?

I think I'd better go to bed now, I'm forgetting how to type.

Eurgh

2005-09-19T19:13:00.000Z

I've just used a spoon to assist some Carrot & Coriander soup out of a thingy in the fridge, into a bowl for microwaving. I licked the spoon.

Cold Carrot and Coriander soup? NOT GOOD, PEOPLE. *gag*

I'm not sure I want the soup any more...

On another note, I was rather lucky last Thursday to be invited to visit and look round a school in North Manchester which was held up as a sterling example of inclusive design: lots of flexible mixing space, seperate boys and girls PE changing rooms - unusual in a primary school but essential with the large local Muslim population, lots of free space and wide doors. There were a lot of daft details like the lift being operated by key (just great for that powerchair-using kid in Year 5 to get to and from class on his own) and light switches being stupid heights for wheelchair-users or kids and such, but it was just so flexible. Kid with gadgetry requring 9 sq. m storage space? No problem. Kid who needs to spend bits of time away from the main class? No problem again. It was nice, and very refreshing, although I think the actual school could be a lot more inclusive in attitude than it currently is. Mild horror at mention of the fact that they may sooner or later have a student above nursery age who requires access to nappy/pad-changing facilities, etc.

It's wrong to point and laugh at stupid people.

2005-09-05T10:52:00.000Z

It takes a special kind of stupid to fall asleep on the Lindisfarne causeway. It's a tidal causeway. It is absolutely surrounded by signs telling you it's tidal and a board with the day's safe crossing times on it. The absence of high water marks at the side of the road is because at high water, the road is under water. The refuges on 20 foot high stilts for any ~~idiots~~ who get caught out might be another clue. Jeez. I hope they charge him for the cost of the lifeboat callout and the Boulmer chopper that had to rescue his dozy arse.

Note for bewildered ~~londoners~~ onlookers: Lindisfarne, also known as Holy Island, is a long, thin island off the coast of Northumberland, which is a large, rural county in the North-East, bordering Scotland. Most of my dad's family hail from there, although his parents were mobile enough in his childhood that he's got bits of a Bristolian accent mixed in with the quasi-Geordie. Let's not even get started on my accent. Cockney with a hint of Geordie, anyone?

Popcorn

2005-09-04T12:55:00.000Z

I decided I fancied a snack yesterday. All run out of traditionally fattening things like chocolate or crisps, so my mind turned to the free popcorn machine that Barclaycard bribed us with to sign up for the aforementioned plastic money back in Fresher's week 2 years ago. It'd never been used before. I'd bought some popcorns (?) from the posh organic grocery with the vague intention of erm, popcorning them and....

Well, I popcorned them. You get a surprisingly large amount of popcorn from a quarter of a cup of corn. Then I put sugar and butter on it, scoffed the lot and resolved to go on a diet. Hmm.

Hello, again

2005-09-03T15:26:00.000Z

Well, I've decided to try and actually learn how to use this'yur gadget.

Wish me luck.

Er.

2005-07-09T20:14:00.000Z

I am not usually a particularly nervy person, but... well, a sizeable chunk of Birmingham City Centre has just been evacuated and the Hard Rock Cafe in Park Lane is on fire. I have a bad feeling about this.

Hello.

2005-07-09T15:35:00.000Z

I'm Becca. Today I woke up late, dressed in a hurry, got a lift to Shul for the first time in yonks, helped organise some nibbles for Kiddush, had a bit of an argy-bargy with the choir director - a previously accomplished violinist but one who doesn't know his hairy arse from his elbow when it comes to conducting and rehearsing a choir, sang in the service, and resolved to find myself another synagogue to go to.

I should mention that I am absolutely shamelessly jumping on the apparent Ouch! Blogspot bandwagon - I have had a LiveJournal, which is largely private and readable only by authorised friends, since October '04 - cause, well, everyone else has one. A Blogspot blog, that is.

Thursday wasn't much fun at all, but the response - from Brits, Londoners especially and the emergency services most of all - has been incredible, they're not kidding when they say Londoners are tough as old boots. I think the old chap that was filmed saying "I've been bombed by a much better class of bastard than that!" pretty much sums it up. And apparently the IRA are thinking of jumping back into the fray over here, too. Charming.

I've just had lunch perched on one of my ridiculous dining-table stools in the sun at the top of my ramp, am listening to the absolutely terrible singing and guitar-playing of my neighbours upstairs, and am generally quite happy. I ought to go to the post office before it shuts, though.