A Year

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.

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...

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.

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?

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.

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.

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.