Finishing Law School

I wrote this as the beginning portion of the form letter which was mailed out today to every paper, tv news station, MP and party I could find. The letter itself will probably be dismissed because the Powers that Be argue it's just "repetitive spam" - sort of like their form letters we get sent to "The Occupier" - and therefore can be ignored. There's a strange disconnect between the fact that a bunch of people too ill to even type somehow managed to find the energy to copy, paste, and send and just being Viagra spam. I felt it took a personal touch for the receivers to understand why they're getting the emails they're getting.
Whether they listen or not is anyone's guess, but if they think we're just going to give up, they can guess again.
Today marks the only form of action or protest I can take due to recovering from a severe chest infection. As a disabled parent with a disabled child I am unable to attend "listening exercises", public rallies, consultations or anything else which involves politicians nodding and looking concerned. I am not the only one as there are millions of invisible disabled people who are being subjected to cuts - not that I ever received help no matter how much I begged and pleaded.
The following letter is "just the facts"; since it seems we the disabled are constantly told to not be emotive or allegorical. We are not to describe in acute detail what our lives are like and how much we struggle - that's not considered a fact, even though we live it; merely an anecdote. It is not considered a fact that I have sacrificed my life, marriage, and health to the care of my child and now look to lose my home and what little health I have left - that is merely a unfortunate story. It is not considered a fact that my son has been forced un-successfully through mainstream schools to the point he has become violent and I have to take on the Tribunal to see him get proper education - that is just a statistic.
But when we try and use facts - some of us barely capable of putting a paragraph together therefore we have to draft a universal letter to use- we're told it's "duplicative". How many of these emails will be thrown away because it's the same thing being said over and over again and therefore must just be spam? Is it really such a mental stretch to see that every email being sent is by an individual who is desperate, but doesn't have the words or political language-speak to be able to describe their despair, their fear and anxiety. It may be too "emotional" for you, but I want you to understand that every one of us who presses the "send" button today does so because we are desperate - we are LIVING THE FACTS, and it's more cruel, more terrifying, and more life-threatening than any mail-count or statistic sheet can ever truly convey.
Maria Miller is desperately out of touch with OUR facts, OUR truths, and OUR experiences. To be in her position with such a total lack of empathy for the people she is supposed to support is a huge slap in the face we have all felt compelled to let you know, whether we're flat on our backs in bed as I have been for the past four days or not.
And so, here is my horribly emotive, dismissively allegorical, uncomfortably personal intro to the repetitive emails you're going to be receiving today. I hope it made you cringe. I hope you winced. And then I hope you decided to act upon it for the better.

Labels: Advocacy

Forgive me while I have another rant:
I've been going over the talks regarding the DWP reform, and I have to say, one thing has really struck me about the whole thing - and when I say struck I mean "bashed me repeatedly in the face". Mainly, that working in paid employment is a great, wonderful experience - it gives you joy and fulfilment and puts a spring in your step and a song in your heart. It would be better for us than any drug - we'd feel amazing and perhaps find our lot in life a little more bearable. In short, employment is an amazing gift and we should be grateful for it, and it will rise us up on the same level as the gods.
Or something.
Now, maybe the Powers Wot Be get on a different tube than I did when I was working full time, but I don't recall anyone going to work singing, laughing, bright eyed and enthused about their 9-to-5. There were no dancing chimneysweeps doing backflips a-laMary Poppins.Everyone looked bleary-eyed, barely awake, putting on their makeup whilst trying to stay in an overcrowded seat. Listen to the tones people use when they describe their job: "No, I can't go out, I have towork." Obviously, this isn't the amazing miracle pill of awesome-sauce the Government wants us to believe - at best, work is a tolerated necessity. At worst, it's a sentence. And it seems that's perfectly understood by the masses as well; their cries of how everyone should "pull their weight" and "I shouldn't have to work just so someone else can sit on their backsides" makes it rather clear that misery loves company. Anyone who isn't suffering along with them must have it easy...and that is unacceptable when said Upstanding Working Citizen has to toil and slave at a job they only tolerate, not love.
This isn't to say that We the Broken People don't find work enjoyable - I love writing, and I love painting. However, I'm also aware that most people don't see that as a "job". A job is when you go somewhere and get a paycheque regularly. Anything else is just a "hobby" - no matter how many hours you spend working at it, promoting, sending off prints , staying up late to hit the deadlines, and so on. It's the same for anyone staying home to raise their children - the future taxpayers of the country. The future is immaterial - we're concerned with the Right Now as We Can See It, and the parent isn't working, ergo, they're holding everyone back. The writer, artist, musician is just mucking about doing something no one can understand, and therefore they're wasting time: and all the cuts to the Arts and to families seems to back those statements up.
I imagine most of us aren't buying it - I would hazard a guess we're more than aware that getting a job as a cashier isn't going to give us mountains of emotional wellbeing and fulfilment. We're not going to have an up-welling of joy and thank our lucky stars we are part of the Employed every time we say "Would you like fries with that?" And so, it seems the answer is to put a bunch of spin on employment, and make it sound like the Holy Grail for all our ills. The masses will back this up most readily - even if they know it isn't true - because the more of us who are as miserable as they are, the more able to shoulder the yoke of their dis-satisfaction. People want to be able to say smugly into our battered exhausted faces "See? That's how I feel every day, but I do it; now you're no better off than I am." No matter that they complain every single day about how much they hate what they're doing, how they wish they had never dropped out of Uni, how they should have studied better in school....if they can put the brave face on in order to sneer in our direction, they'll do it.
There's always so much bluster applied in these sorts of arguments: "You bet I'd clean toilets if that was all I'd get, and I'd do it gladly too!" But somehow if it came down to it, I sincerely doubt they would. I've heard the exact same type of folk disdain taking on janitorial duty in the office or the workshop because it "wasn't their job to do that". It's easy to claim you would have no dignity if you needed to stoop down so low you were squatting when you don't actually have to follow through with it.
I've done some really horrible work in the past, and I can heartily attest that there is no way on earth I'd ever do them again. It's why I do what I do now...because I actually do like what I'm doing and even though it doesn't pay much, it keeps me going. I do enjoy what I do...but I've had two businesses before this which I also loved and thanks to disability and further cuts to work-access programmes, I had to stop. I didn't WANT to - I still don't want to, I really wish I could be doing soap and toiletries again, but I simply cannot do it.
"Well that's fine if you do but there's all those OTHER people..." Really? Unless you're living someone's life from 24/7 how do you KNOW the person down the street is a slacker and faker. It is amazing that it seems everyone knows someone who is faking it, who is 'on the sick'. Again, are you really absolutely certain of that - do you have some sort of pain-o-meter which measures whether someone is really in pain or whether they're not? If you do, patent it; trust me, it will come in handy for all the assessments we're going to have to have. Regardless of what the government is saying to us, We the Broken KNOW what the assessments are going to do: they're not designed to bust the .5% of people who claim benefits as a scam; they're to trim anyone and everyone who claims benefits by 20%. This means that 19.5% of people in England who are claiming legitimately are to be cut. I'm using that word with precision - legitimately claiming. The point is not to find cheats, it's to cut corners.
Stop lying to us about the Amazing World of Retail; we've done it, it isn't all that great. I am still completely baffled at how much pressure there is for us to enter the Job Market when the Job Market isn't ready to employ people like us - how in the world do you get someone with severe anxiety/agoraphobia into the office?! Give them a typing job at home; we have the software, we have the tech - it's not impossible, I've certainly done it myself. And yet that's too much of a forward-thinking stretch at the moment. Again, there is this communication issue with asking us what we actually want to do, and then find a way to carry it out. Want to type at home? Fine, let's sort it. Want to become a carpenter? You'd be amazed how few of those are around these days and the demand is there. Provided it's physically within the realm of our disability, then what's the problem? Surely we're talking creating more jobs here by helping us tailor a business we can keep up, giving us mentors who can guide us through it who are also well aware of our illnesses, and accountants to help us balance the books so the Government can reap the ever-so-important taxes from the fruits of our labours.
But....that isn't happening. Perhaps it's too much like special treatment: the fact we'd all have this available for us so we wouldn't be absolutely miserable after two months is too much an advantage when everyone else was miserable as well. How dare we??? But that's just it - I don't know why it couldn't be something available to everyone. Maybe the fellow ranting so badly against the benefit scrounging scum once really wanted to learn to play the cello - he did it in high school and was rather good at it. So, fine, how about some lessons? He may never be Yo-Yo Ma, but if he was happy, wouldn't it be worth it?
I guess my point - if I have one, rants so rarely have those and that's how this started out - is that getting into work will not automatically cure us of every ailment which plagues us (and that goes for disability as well as national debt). But I also don't feel that anyone, disabled or not, should be forced to suffer doing what they cannot stand solely out of some sense of obligation enforced upon them by a Governmental phrase. Do what you love should always come first, as the disabled are living proof at how quickly the time to do things one enjoys can be cut short. Why wait?
/endrant

Labels: Advocacy, Languishment

This week the solicitor is filing the appeal for my son's case. The hearings have a three month backlog, but that just means there's more time to gather independent evidence. Child will probably need to go through another battery of tests, all of which will need to be done by professionals independent of the LEA, which I'm rather wibbly about; I have been hearing a lot of "think positive" from the LEA for the past two years, even to the point they were reluctant to call him disabled due to "labelling" or "epidemic" issues. Mostly I think they wanted to keep the numbers of autism diagnosis down, even if it meant not diagnosing children who were actually autistic. It took a completely differently authority giving him a high-functioning diagnosis, and my son's paediatrician actually giggling when he read this and saying "No, he's autistic" before anyone would even say the word.
So now I am having to prepare myself to hear what I have suspected, but that the LEA can't or won't say directly: that my son's autism is more severe than anyone has admitted to yet; that his chances at living an independent life at his current state of learning and awareness is rather limited; that he is a candidate to be put into care if I have one more major blow to my health as his father refuses to take over his care. These are things I know to be true but like just about every other parent-carer out there I just try not to think about it.
Yesterday was the Hardest Hit march - a march which wasn't even televised on BBC; up to 10,000 disabled people took part and try as we might, we couldn't get the major news channels to give even so much as a look in. It didn't make the front page - it barely even made the back pages. And while I was womaning the twitter feeds and trying to get interest, writing articles for various groups and adding input in comments, I was once again hit head on by what appears to be the majority consensus that it's just too bad the disabled are suffering, but since most of us are fakers anyway, we should just go and find jobs. And, of course the inevitable "If you can march, you can work" rhetoric as if most of the people who were marching were just scrounging unemployed, rather than employed people who are terrified they're going to lose their jobs once the help to actually access those jobs is cut. One of the best pieces I've read about the march can be found here: "The Downsides of Dignity"
...a glance back at Millbank and I felt the sensation of being on a precipice before falling. I stopped and looked for a moment. These thousands of people were representing themselves and those who couldn�t make it and who can�t speak up. And their lives- our lives- are being thrown into the pits. This is not hyperbole. People are going to die because of what the government is allowing to happen. People are not going to pass the WCA, people are going to find it too stressful to even go to the assessment, people are going to fall into financial hardship, people are going to be stripped of their Disability Living Allowance and lose the privileges that comes with it (as it is a, "passport benefit", and indeed, without it, I would not be on my part time course and I would not have had the privacy of a one bedroom flat to be ill in). People are going to be left housebound and what dignity that have- that word again- is going to be taken away. People are going to have to rely on their partners to support them when they can�t. This is not hysterical. This is real, and it is happening to people. Not just now. In the future, this is it.
I'm sure people would call this "emotive" or "scaremongering". I'm not really sure how people who live this life and are terrified are supposed to communicate. Obviously the showing mere numbers of 10,000 marching people isn't enough. Maybe "emotive" is all that is left now, and that can be rather dangerous stuff.
For our reality, my son needs a special school. Of course if he does that, bang goes his DLA payments, including his mobility component. The assumption seems to be if he's attending a residential school I no longer have to buy clothes for him, or take him on outings, or trips to the doctor or dentist if he gets ill, or attend meetings about his care or education, or make appointments for him to attend assessments. I'm not quite sure how they figure this one but that's the way the cuts are going. If by some completely idiotic process of assessment someone assumes when they see my son on a good day that he isn't worthy of High Rate Care (and you'd have to blatantly ignore every single piece of evidence to the contrary) I would not only lose his DLA but carer's allowance and the disabled element of child tax credit. That's nearly half of what we live on right now - without that I'd have to move into council housing (basically, right onto the dole I've managed to avoid till now), and probably into something completely unsuitable for either of our needs; sticking My Son, the Walking Target to Bullies on a sink estate would be a disaster, and me having to navigate anything with stairs would put me right back to housebound again.
I can't think of any other words to explain this. I can't think of acceptable statistics for it. I can only say what is happening to myself and my son. It doesn't appear to be enough - after all, I'm not an economist, or a statistician. I just live it, and therefore it's merely whingeing. Or something.

Labels: Advocacy

Right, things are now going apace and I will give a quick recap:
- I discovered to my somewhat "Why doesn't this actually surprise me" way that Parent Partnership is sponsored by the LEA. Ergo, the chances that I am going to have completely impartial representation there has somewhat gone out the window. Fine, we'll still see what I can manage to sort out.
- Discovered a great place called SOS-SEN which helps you get on the fast track with help to go through a tribunal. And from there, a number to a top firm which handles SEN cases; and - wait for it - they take legal aid. Details will be taken and they'll open my file. It now becomes Someone Else's thing to deal with.
- Discovered a few misquotes from the meeting minutes of new tribunal in which it seems the school forgot to mention child's issues last year with mainstream; I think people assume I don't keep my paperwork of every incident report of his behaviour when I ask for it all in writing, but I do. And I have every single one. I haven't thrown out any of child's reports since we started doing the work to get him Statemented (yay for legal backgrounds!). So if they want to claim it never happened and they don't have the documentation, I can produce the documentation, as well as the notes I wrote saying "If you keep forcing child through mainstream he will explode". Thankyouverymuch.
- Now have mission to go and look at independent special schools for ASD as there are no such schools that exist in my county - they've all closed or been shuffled into mainstream. These will be residential and while it breaks my heart to not have my son here, I will still get to visit and see my wee man. At the same time, it will also allow me to return back to doing art and writing as well as caring for my own needs and try to get better. I have been told that the LEA will have to pay the fees if the statement is changed to allow for it so I have to get through the schools process, check them out, have my son assessed to see if they can take him. Some of these schools have fees so high I nearly fainted (six digits!!!!) but if they are the right place for child, yep, too bad, they'll have to pay it. Ouch. Almost tempted to see the most expensive one first, you know?
- This is going to kill my energy levels, so tomorrow (although I have been unable to do this for a while, so tired, I think I can, I think I can) I am going to bring in all the paperwork I have in order to apply for housing benefit. It's time to stop working for a little while as I just can't keep this pace up. Travelling all over SW London on the train to look at schools full of kids like the Wump will have me in recovery for days afterwards. I am putting work on hold for a while until I have the strength and energy to do so productively. The time will come. It just isn't going to be right this minute, and hey, that's cool. I can be fine about that. But I need to replace the tax credits with something else in order to keep my house at the moment.
I haven't breathed a word of any of this stuff to sprog as the few times I showed him photos of a prospective school that got used against me when he repeated it when he had a blowup (I don't like this school! Mum says I'm going to a new one! *facepalm*). However when child goes to spend a two night assess period at a school it will be hard to keep the lid on that and I won't even try. It will be a very unsettled time and I'm well aware of it, so I need my wits about me.
So. Inhale. Exhale. Codeine. I know codeine sort of cancels that whole "Needs wits about me" thing but I also need to be painfree and sleep tonight.

Labels: Advocacy, Sprog

It's half term and we're managing to get through it, though I'm still recovering from being ill and haven't really been able to do much. It's boring for child but we've managed to play games and do some playdoh things, baking cakes, and so on.
The pace keeps reminding me that I've got to slow down; I'm trying to work, and I enjoy it, but only if I have the energy to actually do it. I'm gritting my teeth and having to admit to myself, even though it stings greatly, that I simply cannot and should not be working right now. At all, really. I'm gutted, but it's true. I have several scripts, I've got paintings and so on out there, and a book finished, another in the works. But all of this is slow, slow, slow. There are days I actually open the good ol' Word programme and just...stare at the screen trying to figure out what it was I was trying to say. I have three paintings going which I haven't touched - two candles I want to paint, as well. And I DESPERATELY want to paint them. But I just...can't.
I have been persevering because I'm scared to death of losing the house, of not being able to buy food for my son or get him clothes or the hundreds of other things we need but, naturally, neither DLA or Social Services will bother to get for us. I've been doing what I had to do because I have little choice. But the same old signs are starting to appear as last year; simple colds become more than just colds, exhaustion kicks in to the point even brushing my hair is an ordeal. I'm charging headlong into the next crash and burn, but I'm just trying to hold out until the housing benefit kicks in, until the Mobility DLA for child (and am I even remotely well enough to drive if we manage to get it?), until the school stuff is sorted...there's always another reason for me to keep pushing my failing system just a little farther, just a little longer, even if it's the worst thing I can possibly do.
But I think before the summer comes, when there's six weeks of full time child-duty to sort through and I know any work I have will absolutely have to cease if I'm going to get through it, I need to face the music and shut it all down to "hobby" status. No more tax credits (and believe me that's a huge portion of my income right now). No more trying to hit the deadlines no matter how foggy my brain or how much my hands hurt. And that means having to be careful with our food and other expenditures as the money just won't be there - neither will any help if things go horribly wrong.
Not sure who these "most vulnerable" are who are being protected but it damn well isn't us. So, I'm going to have to see what I can do in order to keep the wolves at bay.

Labels: Advocacy, Languishment

Today child is showing symptoms of The Lurgy after having a week from Hades resulting from yet another crap weekend at his dad's. Any attempts to discuss this with his father fell upon deaf ears and I really give up even trying. Sprog and I against the world I guess. In any event, seems child has picked up whatever bug his father had and I hope it doesn't get bad or we could Have A Problem; if I get it I'll be down for the count for weeks and I simply cannot have that happen right now. I'm still trying to catch up with all the lost time from having nearly all of April off from doing any major work due to holidays and wedding faff.
Here is where I am very thankful for having the herbal garden and herbal stocks I have; a mallow root tincture combined with some ginger and cinnamon in honey/lemon water has dosed child properly, moved the gunk in his lungs more productively and soothed his throat. I can add chamomile and lavender to the honey-lemon to help him sleep tonight, and put some sage in hot water in his room, beneath his bed to help him breathe a bit better. All very useful!
This week I try to divide my time between painting and writing. I've got another script nearly sorted and written, and a watercolour is on the verge of being finished. Two pieces are in two different art competitions and one script in a writing comp. That sounds really brilliant until I realise I used to be able to write and send to my work out weekly - now I'm lucky if I can get it done within a month's time. It's frustrating but I grit my teeth and try and do what I can to prove that saying I'm a writer and artist isn't just a fancy way of saying "unemployed".
I'm trying to hold onto my health for dear life this week as on Monday I am off to try and solidify plans for a prospective residential school for the Wump. This is starting to look more and more like a possibility - even to the point the LEA may even back down on the appeal tribunal as I just have too much evidence that mainstream is the worst place for my child. Even the school wants to move him and has stated this in a report I sent in. To therefore argue that all the LEA will do is send him to yet another mainstream school is folly in the extreme. What I do worry about however is the possibility of them sending my son to a behavioural needs school (somewhere for kids who are 'naughty' rather than a place specifically for autistic children). No. Just....no.
In any event, things do progress and I have asked for every single incident report on my son over the past two years, invoking the Freedom of Information Act. I'm cringing already, to be honest- I imagine it's a very thick file. It's been a difficult couple of years for everyone involved but I feel we're reaching the crux point now.
There are still plenty of worries however; the proposed changes to the SEN papers which will essentially abolish Statements entirely is more than a little worrying. So is the cutting of mobility allowance for anyone in care homes or residential school (i.e. I've no idea how I would get to and from sprog's school without the funds to do so, but I'd have to find a way). Then there's Labour now clamouring once more for ID cards for anyone not born in the UK, which turns me once again into "immigrant scum". Anyone who has been round here for a while is already well aware of the whole issue with being disabled full stop. It seems like I'm being attacked from all sides at the moment and no matter what part I try to cover, it just leaves another bit to be exposed for another sucker punch. This is the way I and many other people are rolling right now - and it's how I've been rolling for a few years now.
It sort of makes sense why the ex bailed and found a normal family to shack up with, sometimes. Gods knows I'm getting tired of this mess.
In any event, onward. The thing about fighting these kinds of battles is that I really don't feel I've got anything else left to lose.

Labels: Advocacy, Sprog

Sprog has been listed as a "child in need" since I contacted the social services some time June. We set out trying to get a care assessment for him, and things seemed to move forward. From Citizens Advice Bureau a "child in need" is entitled to the following:
day care facilities for children under 5 and not yet at schoolafter-school and holiday care or activities for school age childrenadvice, guidance and counsellingoccupational, social, cultural or recreational activitieshome helps and laundry facilitiesassistance with travelling to and from home in order to use any services provided by the local authorityassistance for the child and family to have a holidayfamily centresfinancial assistance usually in the form of a loan, see belowrespite care in Northern Irelandlooking after the child, see below.The local authority can also provide the following services to all children in its area, not just children in .need:-day care facilities for children under five and not yet at schoolafter-school and holiday care or activities for school age children.
Guess how much of this I actually get. Go on, I'll give you a few minutes. Did you guess "none of the above"? That would be correct. I get none of this. No help for transport to appointments though it's supposed to exist. No help to after school activities. No respite. No holiday care. No home helps. What I do get is scoffed off whenever I ask.
And, apparently, what I also get is monitoring to see when it's time to take my son away from me and place him in care. That's the other scary bit about having a Child in Need; it seems the authorities are poised to try and take a child away but not to actually put anything in place which might have prevented this in the first place. Because I have missed appointments - these comprise of three hours of preparation for a ten minute appointment of saying the same things over and over again to different people - I couldn't get my son to due to both his and my condition, this is seen as "neglect". My son's behaviour at school escalated to such a degree that of course their first reaction was to blame abuse at home.
I have just realised today - once the social worker called again and said he wanted to "visit" tomorrow - that the care assessment for a care/respite plan is about six months overdue. I have to question what the whole point of this meeting is when it's rather obvious I'm not getting any benefit whatsoever from having them. Just another paper-marking exercise.
I honestly wish I had never looked up the Child in Need thing now...the sheer scale of what I should be getting boggles me.

Labels: Advocacy, Sprog

Quick recap of the week -
I'm still getting the occasional twinge but the aspirin does seem to help - now seems the big issue is more having a stroke than anything else. It's possible I've already had one. There is something eminently mind-bending about the idea of actually getting a consultant to say "There's something wrong" and actually feeling relieved. I know in med-school they teach that expression of "Thank Goodness!" is a sign of an attention-seeking malingerer (because of course that's all we are!) but sometimes it's just the fact that you're not actually going utterly mad which causes the reaction. Just sayin'.
In the light of this fun and games, I called my ex to make the difficult decision to have him take over care. I transferred all the SEN stuff to him to fight for a tribunal on the decision not to change his Statement (more on that in a second), and got ready to be made homeless as I was going to lose all the benefits and therefore the house. Ex took a look through the massive pile of paperwork, tried to get a start on it but his panic and the Pussywhip got the better of him after a week (He lasted three days longer than I thought he would!). He got back to me last week and said he wasn't going to be able to take our son in as it was "too costly" and too stressful. I am not even going to dignify that with a rant: it's pretty much said everything I've been saying for months but Social Services refused to accept. So, child is here with me and I am willing myself not to keel over anytime soon as there's nowhere for my son to go at that point but into foster care. I applied for council housing but even with health concerns we're only at bronze band (which is the lowest apparently) so I don't really see any point in trying to get on that register as it will take ages before it happens.
The DWP letter came back - in light of my being housebound and all these health issues happening, and the fact a friend of mine who is also disabled is having to act as my carer as social services can't be arsed to help me, I have been awarded....wait for it.....low rate care and no mobility. Srsly. I'm floored, but not surprised. Cheers, ATOS. The "perk" to this is that it seems my previous case was looked at again and it was decided that I'd get backpay for the same rates and wouldn't need to attend the Tribunal after all. Of course that's all a ploy - they didn't want me going to tribunal in the state I'm in as I'd probably get awarded something decent, and then of course the current award would then be contestable as there's no cure for my chronic illness - it can only get worse. Can't have that, can we? So now I'm trying to decide whether or not I'll be going protest again, and I've got two clinics this week which may make that a big possibility.
But wait, there's more! Yes, the meeting was had with regard to child's statement. There was such a sheer number of complete bollocks spoken at that (I've received the minutes) that I won't even go into it. Let's just sum up that it seems there is a decided drive to save the SENCO's job rather than to actually represent the truth of the matter; it seems the LEA is completely unaware I have kept every scrap of documentation over the past two years and someone is going to be proven a liar. I now have a lawyer to handle the case for me and I'm hopefully going to be able to look at some schools in the next month provided I don't have another health emergency.
So child and I are still together and hopefully will remain so for a while provided I can get more doctors on board and listening. We'll be keeping the house. I've applied for Housing Benefit and hopefully that will be in soon. I've got someone else to fight the soul-destroying stuff of child's Statement and the school is actually deciding to follow the protocols the NAS specialist has given them so child is actually not blowing up quite so much or so badly at the moment, though I still stand by my resolve that he will not spend another year in mainstream. Health is shaky but the good news is that I seem to be getting somewhere with that - in addition it supports any appeal I have to make to get child into residential school somewhere, whether they want to pay for that or not. I've got a few charity applications to make in which I hope to both get the front path sorted out for wheeled access as well as something wheeled in the first place (not going to bother with trying to get a NHS powerchair or anything, but there are scooters I may be able to get) The ex...there isn't anything I can say. I just hope the sprog never realises how marginal he has become in his father's life. Sprog sure as hell isn't marginal in MINE, though.
So full steam ahead and roll on spring.

Labels: Advocacy, Languishment, Sprog

As part of another project I'm researching women who inspire - and one of the women who I greatly admire is Eleanor Roosevelt. The woman was so ahead of her time it wasn't true. She had a hard go of it: she wasn't physically attractive, her husband was not only disabled but unfaithful, she was in a time when women had very little power or influence. And yet many of her ideas were revolutionary and have become such a part of US history and the rights movement that people seem to forget who came up with it in the first place.
One of the movements she created during the 30's dustbowl days was the Resettlement Administration - a concept of resettling the redundant into rural areas and getting them to reskill to be self-sufficient. The government funded the programmes for a little while and then once they got their feet, the idea was they would take off and support themselves. That's right - it's not just all about "hippy movements"; this was a way for people who had only worked on railroads or in manufacturing factories to try and get in touch with land and produce food when doing so was proving very difficult.
It was a brilliant idea, but there were problems, not the least of which being that it sounded "commie" (facepalm). Also that training of people who had never worked on land in their lives wasn't very forthcoming - more to the point, other farmers didn't want the competition and therefore drove the idea back into the ground. In short, it failed due to greed and too much administration and not enough interworking. People were moved who had zero experience living such a life and apparently it was thought they'd be able to do the job solely by instinct alone. Granted, I think "failed" is perhaps too strong a term - as Arthurvale (Eleanor Roosevelt's pet project) is still going today. I think Arthurvale an exception because she was actively involved in the process and would often visit and tend the ground, listen to people's issues and complaints, and find answers. She was there, not just filing paperwork or pouring money into it, but doing hands-on teaching to people who may never have plucked a chicken in their lives. It did pay off, and while the project was considered "closed" Arthurvale exists.
But here's the problem we have right now - with the pushing of Big Society (which is at its heart a rather 'commie' idea, let's be honest here), the redundancies which are biting into every sector now and not merely the mostly-forgotten lower-working-class, wide tracts of farming land open for use and wrapped in red tape so turning it into a bunch of weekend-homes no one can afford isn't a major possibility, even MORE land reserved for rich folk to park their pleasure horses that they only ride when it isn't raining, the insistence on finding jobs for people on the dole when there are no jobs to be had, and communities of people who have every intention of contributing to the UK economy having to fight tooth and nail for the right to do so (it took YEARS for Lammas), no one has even considered the possibility of doing just this particular concept and turning it into a fully government-backed reality.
What are the requirements? Well quite honestly, they're minimal - the land is there! It might need to be settled up with the banks but this can be done, surely (if we can scrounge up the cash to send off some missiles, then there must be some dosh to buy a farm). Alternative building concepts can be used, of which there are plenty and which would cost a fraction of the amount that trad-homes cost (yes, gods, planning permission - could we just agree that if an expert on straw-bale homes who is fully accredited and actually knows what they're doing can just build the damn houses without all the permissions faff? Just once? Kthnx!). There are certainly plenty of people willing and not all of them are yoghurt-weavers, but people like myself who have no chance in hell of getting a "real job" due to disability, but has plenty of experience living on a farm and therefore a fair bit to teach. If people have nothing financially to give, fine, provided they can prove their capability on working together, which is supposedly what the whole Big Society thing is all about in the first place.
The benefits are huge of course - agricultural land being worked again and the UK becoming a self-sufficient purveyor of its own food (and you can't tell me there's no demand for that when the "local food movement" is gaining momentum). People who may originally thought of gardening, animal husbandry, working on equipment, building by hand, etc as merely "hobbies" as they needed to work their nine-to-five in the City to stay alive could instead do something they loved. Farmers could be paid not just to keep their land idle and fallow, but to act as farm mentors to communities and show them the tricks of the trade which aren't in the agricultural books; they could even hand on their own farms to communities which they would teach themselves if they had no children willing to take on the job (and most don't - it doesn't pay enough). As a disabled person, I could finally have a "real job" that people might accept as being work as I have done this sort of thing before - I know how to spin, make soap, make bread, cook on a wood stove, brew beer and wine, make butter...on and on, but what prevents me from doing it now is almost all communities are looking for healthy 30-somethings with jobs outside of the farm as the land-prices are too high to just jump in and get started. The "multiculturalism" hit that Cameron plays up would finally be kicked as people from different backgrounds would join together provided they had a willingness to do so - and as a multiracial purple-haired chick living in New Forest for a few years I can tell you that the community accepted us readily when they realised we weren't the druggies or satanists they may have previously thought we were (having a really cute baby and paying our tab at the pub helped!)
In my mind, it works - and granted, I'm well aware that I'm not an economist, a big-plantation style farmer, or a sociologist. But then neither were the people on these communities. I know that it is A Change - and a rather big one, and one thing I know for a fact is how much British people hate change. I'm aware there will be arguments that the land isn't free and still needs to be paid for (yes, when a farm goes into administration the only people owed are the banks, and sorry but a government subsidy should be able to deal with that). Or that what we need is land for more housing - yes, true, but building weekend homes in the middle of nowhere is not a solution for that. Then there's the "commie" thing again: well that's just reactionary language to get people to knee-jerk at something you don't want to have to do. It gets quoted a lot both here and in the US and it's ridiculous. If anything, what we're talking is more like a feudal system with the government being the "lords" and that sort of system has been on this soil for thousands of years.
The fact is the current economic model which came into being over the past 200 years is unravelling, and fast. There are people who want to work - disabled, redundant, what have you - and yet can't as there's no jobs. There are long-abandoned farms which due to planning-permission bureaucracy are never going to be anything else but farms and therefore will stay abandoned and dormant for years. We keep running short of food in this country because we import a lot of it and the crops are failing in Europe and round the world due to major changes in climate.
If the British people pride themselves so much on being an island and staying insular, then it seems to me they need to start thinking about how to encourage that, and not keep importing every single thing they want or need. We need to make advancements in figuring out how to be more self-sufficient. The means are here and the willingness as well (good gods, do a search for homesteads/intentional communities and you'll see how many people there are who are willing to get involved, but are held back due to massive land prices).
I know there are a bunch of textbook reasons why this isn't an easy or immediately-financially-viable thing to do. I know that land-greed is a major issue in the UK and if the government can just start handing land over to needy folk (as the Powers will try to interpret to their own ends) then there will be an uprising of corporate bods who were hoping to turn that stretch of farmland into another rapid-devaluation suburbia. I know that locals get weirded out by the idea of communities as they're plagued by the idea of "dirty travellers" and "druggie hippies" as the only people who are interested in that sort of lifestyle. I know that the apple industry collapsed because supermarkets wanted either red or green apples, not apples that looked like both, and eggs are brown here because the marketing team thought they looked more "rustic" and they sell better than white eggs. I get that, I do. But at the same time the way things are going, the economy as we know it is collapsing, and since the government keeps asking for "alternatives" I don't know why they can't just take a chance on a pilot community and see what happens.
So I guess...I have to wonder and ask "Why not? After all, what is there to lose?"

Labels: Advocacy, Garden Project

I'm going to seethe a moment here....
A woman complained recently that her son, who is 6 years old and autistic, is about to lose his speech therapy plan. The response from Mr Cameron was not exactly encouraging. "You have to make the fight" to get what your children need, is his response.
Excuse me, what planet are you on, Dave? As the mother of an autistic child all I have been doing for the past four years is fight for my son's needs. I fought to get him a Statement, then I had to fight for the Statement to be changed. Then I fought again to get him appropriate support as the Statement didn't give enough, and now we're having emergency review two. I've threatened to take my son out of school due to his behaviour and that has been a fight of the past year - the NAS society psychologist dropped in this week and admitted the school is woefully incapable when it comes to autistic children, but the only reason they're scrambling now is I called their bluff. They were going to put off any meeting for a review until sometime in March. When I wrote my letter to the LEA, suddenly they were able to hold an emergency meeting next Wed. And so it goes, and so it has gone for four bloody years of tears and monthly meetings, phone calls from the school and a lot of commiserating looks and zero action from the local council.
As a parent of a disabled child, you have to fight for everything; care plans and equipment, education and transport, inclusion and respite care. Even before all these cuts and tightening-the-belt bollocks, nothing has ever been given out with ease. I got no help from the council for garden accessibility for my son even though recent clauses make garden access for disabled people a right. I get no help with respite care, no assistance with getting equipment for my son's room, and it was me to told the school about the various autism education projects out there because they didn't even bother to look for them.
I can heartily assure the Right Honourable Gentleman that the mother in question probably fought tooth and claw to get her child the speech and language provision for her child. Chances are she fought like hell to get him diagnosed as there seems to be a decided reluctance for labelling children with autism in the medical profession which hinders any progress you might be able to make. She fights every day. The patronising language of a man who had enough money to hire as many nannies, equipment and medical help he needed when his own son was alive makes me ill. Not all of us have well lined pockets, and if you never actually work with the social system and realise how much you have to beg for even the simplest of items, you have no idea how much of a battle everything is.
This Big Society thing is such bollocks; I know everyone keeps going on about Egypt but I can't help but think we're long overdue for a bit less of the stiff-upper-lip and a bit more revolution.

Labels: Advocacy, Sprog

The One Month Before Heartbreak has gone on for the past two days and the support has been tremendous. There's now almost 2500 signatures on the online petition, more than double was there before the campaign. The blog entries are being retweeted and shared all over, not just to disability coalitions but to mainstream sites like Deviant Art, Myspace and Facebook. People who are not disabled and had no idea of the changes are signing on, horrified at what is being proposed and showing support.
Of course, all this publicity also means we get the other side of things as well - the people who say "I don't get DLA so this doesn't affect me" or, worse still, who accuse the whole campaign of pity-seeking and scaremongering. The thing is you don't wait till AFTER legislation to launch a protest. It's much easier to get things noticed before it starts than try and fight the law once it's already a done deal.
There are arguments that we are "seeking attention" that we have "No dignity" for daring to post what we've been posting for the past few days. I know it goes against the whole ingrained stiff-upper-lip thing to actually try and bring some attention to one's plight, but that is the only way things can improve and progress. And the simple truth is it took centuries for the disabled to achieve any sort of equality or even status as a human being.
It's worth remembering that only 100 years ago, disabled people were institutionalised and kept out of the public eye so that the public would need not feel embarrassed to look upon a disabled person. Accessibility was not an option as the disabled were expected to stay indoors, locked in attics. If you had the social standing to have a nurse, they bully for you. If not, your family provided.
Treatment was nearly non-existent; if you were female and mentally ill you had "nerves" and just needed to buck up. You'd be dosed with laudanum or even prescribed to have children to "give you something to do". In some cases, mental illness was defined as sexual tension and you would be manually masturbated by an attendant (read sexually assaulted/raped) as part of "treatment". Operations were rarely successful and more often than not fatal.
This wasn't all that long ago, merely a century. The current social standing of disabled people only came into being after WW2, probably due to the fact so many soldiers came back with irreparable damage both physical and emotional (several grandfathers of mine were walking casualties from the war). DLA and welfare came into being in the late 40's. But now, a scant 70 years after such measures have been taken, they're about to be revoked.
Some of the legislation is so baffling (treating people with mobility aids as being without disabilities and therefore not in need to assistance, yet no explanation as to how people would be able to get funding for these aids in the first place is one which springs to mind) it almost reads like a joke. Maybe the sheer disbelief that anyone could honestly make that kind of claim is the main motive - it sounds so ridiculous that it cannot possibly go through, and hence it is ignored. However, this is the way things are going to roll.
During the Thatcher era, comedians joked that the Tories were proposing a tax on "wheelchairs, white sticks and glass eyes". It was a joke and people laughed. Now? That actually doesn't seem so far off, and hence the campaign.
Is it "scare mongering"? It's not scaremongering when people who are normally silent admit they are truly afraid. Bravery, yes. Gods knows most papers only want to run the feel good stories about how "brave" someone is being about their illness like a proper Tiny Tim as opposed to admit to the incontinence and crawling up the stairs and being spat on. No one likes to admit that they find disability distasteful, but it's probably time people owned up to it, even if one wants to look away instead.
Is it "attention seeking"? Again, a lot of people who have contributed to this whole campaign have done so with a qualm. A good portion of getting through life when you have a disability is to not think about all those awful things which slow one down - in short, exactly the sort of thing you have to put on the humiliating DLA forms in the first place just to get a few quid.
The thing about protesting something which people don't feel affects them is they're already predisposed to look right through you. So, you have to get them to notice you in order to listen. This is what marching protests are designed to do. It's what speeches and publications do. None of these things are open to the disabled populace due to energy, infirmary or mobility. What's the alternative, sit quietly and hope?
It's a bit depressing to see disabled people spewing the same Daily Mail rhetoric they've been reading, but I know from experience it's no different from some women I have met who had rather nasty things to say about feminists, or African-American people I knew in the US who spat the word "n*gger" out to anyone who was earning below a certain wage. I've even heard it out of my ex's mouth - descended from direct Irish boat-traveller stock, he's got the most scathing things to say about "pikeys" now which I find completely baffling and utterly ridiculous. He calls his bigotry "British patriotism". It isn't of course, but he has convinced himself his bigotry is just being a poor scapegoat white guy in the financial banking sector. It's pointless to try and convince him otherwise and I don't try.
Instead, he has had to take over twice last year when I was in hospital, and I've had to explain to him what we'll have to do if I literally cannot continue being our son's carer. No more filling in with child only when it's convenient. No more stashing money away for a mortgage which never happens as he loves his comforts; no more trips to Europe for skiing and once a week pub trips or fencing lessons. Hard work, 24/7, that doesn't ever stop. That alone has managed to get his attention and while it hasn't given him impetus to fight the DLA cuts, it has made him more aware of the struggles I face and he's more willing at least to throw money in my direction, if not necessarily understanding and his personal time. Better me than him is his view, and at least it means I have a pretty big amount of child support to fill in the gaps.
Just like the fight for equality between sexes or races or what have you, with one side trying to get frustrated and accusatory and the other side feeling ashamed and therefore defensive, the main point gets overlooked - what we need is acknowledgement. I don't care if you weren't the ones who put my ancestry in chains, I don't care if you weren't the one who actively made sure I earned less than the men I worked with as a welder even if I was the better welder. I don't blame anyone for my son's autism. I can deal with that. But what I cannot deal with, what I refuse to tolerate, is the blinkered thinking of people who think because they did not have a direct hand in the problem, they therefore have no responsibility to find a solution. Just because you are not female does not mean you cannot play a part in equality. Just because you are not "coloured" (ugh, hate that) doesn't mean you can't at least do your bit to make sure it's not an issue. And if you are not disabled or poor or a single parent does not mean you have the right to turn your back and refuse to get involved.
Conversely, it helps no one to see the enemy in every single white face you see on the street. Maybe as a multiracial person I get that more than most as neither white nor black culture claims me as one of them. I know reverse racism becomes a big buzzword at that point, and herein is the problem - as soon as reverse racism happens, legislation does a u-turn, often very quickly. As soon as the majority starts feeling defensive, the minority will suffer. I've seen it happen time and time again, and the only way it's going to stop is if there can be a whole lot less "you people" on both sides and a lot more "maybe we need to...." There's no excuse for that sort of behaviour when we are talking about "Big Society". That is what Big Society MEANS; you, me, the travellers down the road, the disabled, the single mum, the kids loitering outside. Everyone.
Tear the blinkers off and acknowledge that if we're all in this together, that has to start on a fundamental level of actually responding and standing behind interests which may not directly affect you. It means putting aside some differences which you may struggle with or which are so ingrained you don't even realise you've got an issue. In other words, stop seeing people as upper class, lower class, traveller, Asian, Irish, northerner, or migrant. We are all Britain when we stand on her soil. We can either spend a lot of time blaming someone other than ourselves and waste time, or we can look in the mirror, acknowledge our own person prejudices and decide to look beyond them for long enough to effect change.
Wishful thinking perhaps, but I live in hope.
It's been a very exhausting weekend, and at the end of the day, I'll be changing my profile picture again and going back to talking about gardening and the trials and tribs of being a single mum of a very lovely, challenging boy. I'm somewhat relieved, as this has been a huge drain on my energy and my spirit, but there comes a time when you have to take the everything's-fine mask off and show people what is really going on. This weekend has changed my perspective in profound ways. And I hope it has done the same for all of you.
In closing, I want to link to a post which pretty much sums up everything I have to say about this weekend. It's the two-fingered salute, it's the laugh of defiance. And it's also a reminder that I do not have to suffer solely to be "believable". Nor will I.
Please join us, help us fight, and keep the pressure on.
Thanks.

Labels: Advocacy, Languishment

I got a call (again) from the school as my son (again) went off on one. This time, he apparently put his hands round a student's neck and tried to throttle her. Whether he was acting out something he had seen on telly or playing a "game" or was decidedly angry, I don't know. But enough is enough.
My son's behaviour at school has become more and more violent of late; every week I get new reports of him ripping something apart or assaulting someone. I have been trying to voice my concerns to all and sundry but have been getting the usual reassurances. However, they called my ex the last time sproggo went off the reservation and even he was rather alarmed as he had to talk to child on the phone to try and calm him down - he said he didn't recognise his son's voice. He felt as if he was talking to someone else, and whether that means there's something else going on rather than autism I don't know and right now I don't really give a toss.
I don't see the point of continuously putting him into a stressful situation, and therefore I'll be taking him out of school by the end of next week. Yes, I know how much work that will be; I also know I'm going to get zero help doing it. I have voiced doing it before and everyone, from his father to his social worker told me I "couldn't possibly" as my health is so poor. But since none of these people seem willing to do anything to help either, I think their opinions are rather moot. If everyone is just going to stand about and wait until my son puts someone in hospital or gets beaten to a pulp because a Year 6 boy found out he assaulted his little sister, then I'm going to have to do something. And taking child out of school until they can get an appropriate placement seems the only option; I'm sure this is viewed as merely a choice, and proof that I have made a miraculous recovery in strength and health to even consider it. Nothing could be further from the truth; my son is drowning and I vowed early on if I ever saw it happening in school, I would save him.
The school hasn't done anything along the lines of the measures which both I and my ex gave advice upon - the room which originally was a time-out room (read 'prison') was then moved into being what I thought was a decorated chill-out room, as we've both been saying needs to happen. Well, turns out not to be the case; they've turned it instead into a smaller learning room for him to go into if the mainstream room proves too much (which of course it always does). Therefore, he now has NO designated chill-out space; and they wonder why he freaks out.
There's no extra chill time to transition him on Mondays (when the worst of the problems tends to be), no time allocated to allow him to burn off steam, no added interest in art or music or things he finds enjoyable as it doesn't fit the National Curriculum offerings. And so, slowly but surely, sprog is going mad. He's lost all interest in pretty much everything - no lego, no painting, no modelling, no even going outside. He tends to want to sit at home, watching videos or running back and forth in his room, shouting and calling to whatever movie is playing out in his head. He's withdrawn and barely interacts with me at all.
He's had enough. And so have I.
No, it will not be easy; summer break is finite and even that is a very long stretch of time for me to get through, and I have no idea how long I'll be able to do the homeschool thing. There will be no respite, no assistance from the council, and very little guidance other than a bunch of people telling me I'm making a stupid decision. I am not looking forward to it; I will be exhausted, and on top of the homeschooling I will have to keep working - I have little choice unless we want to be homeless on top of everything else. I'm now thanking the stars for that extra cash as I now have to invest in teaching aids and plan for transportation costs, coordinate with the childminder at least till this summer so I can at the very least have a few hours a day to work in peace, get the cleaner in (I will have NO time to clean at all) and somehow dredge up the ability to hobble my way from activity to activity. I've got groups to join and the LEA to contact in order to keep pushing for a special school placement - and if that doesn't work, tribunal.
I've been awake since 2am trying to figure out how to rework sproggo's room so it can become a learning space, yet still allow him to run back and forth as it's obviously something he needs to do right now just to burn off his frustration. I hope that eventually goes, or we can channel it outdoors when the neighbour kids are out at school themselves. I've been trying to figure out where he might be in science, in English, whether he's doing foreign languages (he asked me how to say certain words in Spanish and I remembered, but only just - and why shouldn't he start working in a language of some sort?). Assessing math is difficult as I suck at maths - that would be my ex's field of expertise if I could get the man to show a vested interest in teaching his son, but I won't hold my breath.
It's 5:30 now, and soon sproggo will be up and demanding breakfast, repetitively asking for fudge even though I've told him it won't happen till the evening, trying to assess what movie I can allow him to watch and whether it's safe to leave him here watching it quietly on his own so I can sleep upstairs or whether I should just keep myself awake as best I can. I've his room to clean and re-arrange, things I'll have to order and read up on. And I've got to get some work done later tonight.
And so it will have to go, for now.

Labels: Advocacy, Sprog

Meds have been suitably administered, treatment of skin-reaction to tape and adhesives done as well (curse it, that seems to be alive and well). I don't need injections at the moment but I am taking aspirin daily for the next two weeks till the chestpain clinic when I have some more heart tests. I have to say that the consultant I got was AWESOME (and he snickered when I said that, it's a very American word and he actually loves the US, just isn't all that pleased with the healthcare - we had a long rap-session for a while, really cool doc). And everyone was bril to me which really balanced out the last few times I've dealt with A & E. Full blessings to those folks!
I am taking my somewhat-radioactive self into town shortly to sort out the Housing paperwork I was sitting on for a while. I know applying for it now is probably going to get held up as my situation will change quite rapidly in a few months but if I get some backpay I should be able to cover myself for a while. I don't exactly know where I'll be moving to though I am going to try and stay near my friends for the sake of social interaction (social interaction? What's that? I remember it vaguely....)
I'm going to get my potatoes into their growing sacks but for the sake of springtime considerations, I'm not planting much else for now as I'll only have to move it. It can wait until I sort things out and I am somewhat settled. I am still going to work in the garden as I tidy it up and prepare it for spring, certainly in better shape than it was when I got here, which I hope will excuse the state of the house's interior as I doubt I'll be able to afford to have the full-on-cleaners and house painting when I depart the place. Again, I've got the photos of what the place looked like before I started working on the garden if he wants to argue, there's at least �5,000 of work done out there. I'll miss the garden, but I'll be sure I'll have another. And proper access to the front of the house for a scooter would be fab, too!
For now, I've got to get the slow wheels and gears of the System turning and have The Talk with the Ex about how his life is about to get incredibly "inconvenient" in six weeks' time.
At least it's a niceish day outside!
********
Right, Ex talk given although I bit my tongue about having him and the New Squeeze round my house to pick and choose what they'd want to take to their place; sorry but the eccentric aunt has not died so relatives can rush over and see who gets the silverware first! I will tell him what he can have, he can decide to keep it or he can arrange to sell it if she thinks it has the wrong colour/energy-vibration/whatever. But they're not playing newlywed-shopping in my house.
Child will be back later tonight and I'll be putting together a cribsheet of care; two weekends a month is NOT sufficient to know what sprog can or cannot handle and there are things I'm certain ex isn't aware of at all that I need to fill him in on (sprog's intolerance to non-homogenised milk for one). We'll progress with that as we go.
I've got the school visits to cancel and the next few months will be rather tumultuous. I'm going to just hang in there best I can, but do expect I may go rather quiet for a while as I will be in a state of flux. However, it is a state I have been in before, and I am capable of coping with it. Not pleasant but it won't end me, either.

Labels: Advocacy, Languishment

I want to address something I imagine other blogs probably won't. I think it's important and it's something I don't think people want to talk about.
As a multicultural woman, gods knows I've seen both sides of the racial equality battle in the US; I've had African-American folks have a go at me for having fair skin and green eyes, I've had white people introduce me to the n-word at a very tender age. I've been pressed to "embrace my culture" (meaning, African and African only) and I've had the struggles of my mother's family during the 60's considered null and void because they were white. I've gone through the not-ever-dated-by-a-white-person thing (and am going through it now in the UK), and the "Can I touch your hair?" thing. I suppose this could have made me rather aggressive about the whole "race thing" - there does get a time when you get tired of being the Spokesperson For Racial Togetherness by being multiracial - a point where you have to smile and nod rather woodenly whilst people assure you they're not racist and then say something completely ignorant within a few minutes.
But the one thing I can say is I never got that "Angry Black Woman" thing happening. I don't jump down the throat of a black man who dares to say something about me, I don't argue for hours with black women who have their own issues with my skin-tone and how being able to "pass" must have made my life so much better than theirs. I don't force every single white person I've ever met into a long discussion about the Diaspora. If people ask and want to talk, I talk. I'd rather they asked their questions - even if some of them are monumentally stupid ('Who is your favourite rapper?' - I once answered the last one rather tersely 'Chopin'; I hate rap). Questions which are answered honestly educate people a bit more and the point is education, not smashing something down someone's throat. White folks don't listen when you get angry and force them to acknowledge what happened ages ago - and even though all one tends to want is acknowledgement, not just some offhanded "yeah, well, sorry" that means nothing - you won't get it going into Angry Blackfolk mode.
Over here in the UK was the first time I never had to have the "Multicultural talk". It just didn't seem like a big deal. However I think that may have more to do with the fact the English rarely say what's on their minds; when served a really rubbish meal one night I was surprised my ex was all smiles to staff, but then as soon as he got into the car he announced he was going to write a letter to the manager. "Um, why didn't you just talk to the manager?" This earned me a horrified look. "We don't do that here," I was told with a bit of reproach. I suppose the direct approach is just too strange - instead, people either stare at you or, worst still, look right through you. Don't draw attention to oneself, don't force someone else to be embarrassed into acknowledging you. I can't help but think that my decidedly Not-English appearance is certainly noticed, but rather than comment on the weirdness of it, people ignore it. I haven't had a compliment on my appearance by a man in the UK in the 12 years I've been here; it does a lot to one's self esteem, let me tell you. But I suppose that's better than being called an ugly fat bitch to my face so I guess I'll take the silence.
This can sting a fair bit for a person who is disabled. But I also wonder if perhaps there isn't something else at work - what someone recently called the "Crip with a Chip" person; sort of like the ABP, the CWAC is the type of disabled person who will slam into you with their wheelchair and then dare you to say a word. If you cast a single glance in their direction, it's automatically returned with a hostile stare. Any attempt at maybe trying to start a dialogue about anything, the "You're wondering about my hearing aid/cane/etc, aren't you?" sentence comes in a voice dripping vitriol. Even if you really wanted to know about their illness, out of wanting to understand or compassion or human regard, you'll get your head snapped off and handed to you. The CWAC is The Only Crip in the Village, and everyone else is either not nearly as disabled as they are or faking it.
When people meet with the CWAC, they never forget it - they also have a real hard time not seeing anything but Chip-Crips when it comes to protests and social actions. Their version of "white man's guilt" kicks in and they knee-jerk against it. We shout, they clap their hands over their ears and hum. Try and get eye contact and their eyes unfocus as they pick up the pace rather briskly. It's not that we don't have a point; we certainly do. It's not even that most of the non-disabled are utter jerks without a shred of humanity; it's that they just plain don't understand. How can we even begin to explain it when our bodies are programmed for forget pain and illness shortly after recovery? Sure, the Spoon Theory does so brilliantly but in order for that story to be told, the non-disabled have to be willing to listen, and we disabled have to be willing to talk.
And I will say right that if people ask out of genuine curiosity or wanting to know, I'll talk to them; believe me I know the difference between the person talking specifically so I can hear about what a crap parent I am to have such a badly behaved child, and the person who gives a somewhat guarded laugh at my son's antics and then asks (with considerable anxiety) "Please don't think I'm being rude but...is your son all right?" Yes, it might be said rather clumsily and I suppose I would have grounds to get rather angry at the idea of my son "all right" or not, but the fact is the person really wanted to know, they just didn't know how to say it. That deserves as honest and as gentle an answer as I can give them, and most of the time I am thanked rather profusely for taking the time to do so. I am not going to jump down your throat because you didn't use the "right term" - I don't like the word "nigger" coming out of ANYONE's mouth, and I certainly am not going to be happy if you refer to my child as "retarded" or "weird" but I won't faint in coils if you use "cripple" or "disabled" at me. If anything I find the flowerly crap really annoying ("People of Colour"? WTF is that? Makes me sound like a damn rainbow...don't get me started on 'differently able'!), but everyone is different. Personally I'm just happy you're talking to me, we can work out the semantics later.
So, today in honour of the Blog Against Disablism, rather than batter the non-disabled with stories of how hellish my life can be and somehow insinuating that it's their faults, I want to open the dialogue, I want to brew a cup of tea, I want to sit down, offer a biscuit and say "I am disabled, and so is my son. If there's something you want to ask, please do, and I'll answer the best I can provided you can try and respect my feelings whilst we do so."
Come Talk to Me.

Labels: Advocacy

One Month Before Heartbreak snowballed in a way neither I nor the founders at Broken of Britain expected, methinks. What started as a few people's grim determination to yell into the silence became a rallying cry for many people; people who were convinced they didn't have the strength to fight, didn't have anything of use to say, didn't have any hope. People bared their souls for the blog entries, digging up a huge amount of courage to do so, and it was amazing. There are nearly 500 more signatures on the DLA petition which have been added in the past 24 hours and several charities have also joined in the fray.
However, perhaps due to the crisis in Tunsinia and the flooding in several countries, the papers are still strangely silent. Nothing on BBC news. Nothing in the Guardian but towards the back lost from the main page. Nothing from the governing bodies. We're amassing and we're ready to shout, but the Powers Wot Be still have their ears plugged tight and are averting their eyes.
It's not on, really.
So another day into the breech, as it seems the campaign has gone viral. I'm sure that Emma, Bendy, Rhydian and all the others who have been putting this together are exhausted today and running low on spoons and on a weekend I have to provide full one-on-one to my son, however I will be submitting two previously-written entries which are here on this blog: O Son My Son and Work Will Not Solve Everything. I'm hoping we can keep hammering on the wall which the media and government have kettled us into to keep our protesting quiet. Eventually we'll break through. Stick at it, and persevere.
Today for me, I'm baking brioche and blueberry muffins, dedicating the day my son and I as we bake and cook together and plot and plan over the garden seeds which are arriving. These are the days cuts cannot take from me, even if they try, and I savour them.

Labels: Advocacy

D from Independent Gardening told me one of her landscaping mentors was making a roundabout point in a conversation once about why OTs for social services, and social services themselves, do not recognise gardening as viable therapy for the disabled. Eventually D asked "Are you saying OTs don't think gardening is important because they live in flats? Right, I agree."
I thought at first this can't possibly be true...with all the information out there by Thrive, Cultivations, and Gardening for Disabled, with every single hospice or autism school which installs a therapy garden, surely they'd twig on that gardening is important, even if they didn't have time for it themselves. But during my appointment with my new OT (fourth one!) and social services representative, the question that came up was "How can you possibly garden as ill as you are?" (read - ' as you claim'?) They quite literally didn't think I could possibly be as badly off as I was if I was able to do all the garden work, and end result? No care plan.
The truth of the matter is I have to force myself to get out there - I had to force myself to mow the lawn, force myself to water, force myself to weed. Toward September time, I couldn't do it as I was getting more and more ill, but up till then I did. It was discipline, and it got me moving. It wasn't always something I wanted to do - who loves weeding?! - but I had to, and therefore it helped me get off my butt every day and do something. Since "getting around and moving" is considered important by most of these health professionals, you'd think they'd get that. But they don't; they truly don't get it. It doesn't help that apparently one of the training techniques for spotting benefit fraud is the purchase of garden equipment. Again...HOW is that even considered fraud? I don't get it.
This was again pointed out to me when we discussed housing and they pushed for me moving into council housing. That is a NO. If I wanted council housing in an overcrowded estate I could just stay here with the Asbos and anti-social kids throwing bottles into my minuscule garden. And the gardens would be TINY. Tiny gardens don't work with my son; he needs space to run, and we need space which won't allow for him waking up neighbours on either side with his yelling at 1am. I even said as much - detached bungalow with a garden and space for some chooks. The reaction? They laughed. But then they wanted to know why I don't get housing benefit or income support if I'm so badly off, and my response was "I don't have much but living like I do means I live how I please, not how someone else dictates. And you just laughed at my idea of good living, so point made." Again, possibly not the best response I could have given as I'm trying to get them to help me, but I have a right to live as I please, and I'm not using the ever-bemoaned taxpayers' money to fund it. I work; although the look on the face of the social services rep said she didn't think what I was doing was work as I've yet to generate meaningful income, but I'm only claiming on what I'm entitled to as a working disabled person, caring for someone else who is disabled. I get scrutinised enough on a regular basis, I don't want any more issues from the Jobs office, getting sent off to work I cannot possibly do.
I was a bit discouraged and actually even considered wavering a bit on it; I looked up some council housing and was, obviously, less than impressed. In addition, I remembered what I had read earlier last year about Wiltshire Council having a terrible rating re: council housing. And then, of course, there's the new legislation which may require you to move out after two years anyway, whether you have any money or not. Why would I intentionally do any of this? It's like standing in traffic waiting to be hit by a bus.
So if the option is to move into some cookie cutter ramshackle piece of property no better than what I'm currently living in, I'm not all that interested, especially if there's no garden whatsoever and it comes with such a heavy price. It might save a bunch of money for me to sell my soul that heavily but I'm well aware how much it would cost me in the long run, and I'm unwilling to do so.
I'm not sure I can convince the OT or SS any of this, but I'll stick to my principles regardless. It may mean I refuse the DFG if they are going to insist in moving me into somewhere I can't stand, but then I'll just have to try and save up to move throughout the year, and it gives me another year with this garden. No bad thing; I can deal with the house falling apart for a little while longer if the payoff is my garden space.

Labels: Advocacy, Garden, Good Life

((I've been working on this for a day or two, pain in my fingers has meant I had to spread it out a bit and also copy and paste from pieces I used for One Month Before Heartbreak. I've sent this out to as many links as I could as I am most bothered by the lack of media cover. We can sit here and doom and gloom and Illuminati-theorise about that...but I can't be arsed with that sort of thing. Instead, I'll do something, and so here it is.))
I am a lone disabled parent with a disabled child and therefore cannot take part in the protests today as I can barely stand. More to the point I receive no help or assistance from Social Services, my DLA payments don�t even take my lack of mobility into consideration and I have no childcare respite coverage. I struggle to work in the arts industry which has had 30% of its funding cut so galleries are closing. Writing may be easy now thanks to Kindle but it is a flooded market with free books so no one wants to pay for writing anymore. In addition cuts to libraries and the royalties libraries used to pay writers for having their books on the shelves have once again made writing a "hobby" and not a career. This is the only work I can do as I can write and paint in bed, exhausted even after 20 minutes. This email has taken me several days to write, so I would appreciate it if you actually bothered to read it. The pain in my fingers has been intense with the typing and would make other people burst into tears; other people who don�t have to deal with this sort of pain on a daily basis. If you're not disabled and therefore think this doesn't apply to you, I ask you to read it anyway. It won't be a comfortable read and it's not supposed to be. It may shock you. It may anger you. If it does? Good, then maybe it might inspire you to do something as neither I, my son, nor anyone like me can fight this battle alone, and we need your help. Please keep in mind that you are not just fighting for a stranger, but for your own potential future. As BendyGirl stated recently in her article in the Guardian: "It might seem too dull or difficult to think about but, remember, we disabled people are the same as you, it's just that we've already experienced our life-altering situation and you are yet to do so." A woman complained recently that her son, who is 6 years old and autistic, is about to lose his speech therapy plan. The response from Mr Cameron was not exactly encouraging. "You have to make the fight" to get what your children need, is his response. Excuse me, what planet are you on, Dave? As the mother of an autistic child all I have been doing for the past four years is fight for my son's needs. I fought to get him a Statement, then I had to fight for the Statement to be changed. Then I fought again to get him appropriate support as the Statement didn't give enough, and now we're having emergency review two. I've threatened to take my son out of school due to his behaviour and that has been a fight of the past year - the NAS society psychologist dropped in this week and admitted the school is woefully incapable when it comes to autistic children. They were going to put off any meeting for a review until sometime in March. When I wrote my letter to the LEA, suddenly they were able to hold an emergency meeting � and again, no Statement change (as a matter of fact we�re now being told Statementing may be part of the cuts). And so it goes, and so it has gone for four bloody years of tears and monthly meetings, phone calls from the school when my son exploded and attacked other studens, and zero action from the local council. As a parent of a disabled child, you have to fight for everything; care plans and equipment, education and transport, inclusion and respite care. Even before all these cuts and tightening-the-belt, nothing has ever been given out with ease. I got no help from the council for garden accessibility for my son even though recent clauses make garden access for disabled people a right under the Disabled Facilities Grant. I get no help with respite care, no assistance with getting equipment for my son's room, and it was me to told the school about the various autism education projects out there because they didn't even bother to look for them. I can heartily assure the Right Honourable Gentleman that the mother in question probably fought tooth and claw to get her child the speech and language provision for her child. Chances are she fought like hell to get him diagnosed as there seems to be a decided reluctance for labelling children with autism in the medical profession which hinders any progress you might be able to make. She fights every day. The patronising language of a man who had enough money to hire as many nannies, equipment and medical help he needed when his own son was alive makes me ill. Not all of us have well lined pockets, and if you never actually work with the social system and realise how much you have to beg for even the simplest of items, you have no idea how much of a battle everything is. My son has been listed as a "child in need" since I contacted the social services some time June. We set out trying to get a care assessment for him, and things seemed to move forward. From Citizens Advice Bureau a "child in need" is entitled to the following: � day care facilities for children under 5 and not yet at school � after-school and holiday care or activities for school age children � advice, guidance and counselling � occupational, social, cultural or recreational activities � home helps and laundry facilities � assistance with travelling to and from home in order to use any services provided by the local authority � assistance for the child and family to have a holiday � family centres � financial assistance usually in the form of a loan, see below � respite care in Northern Ireland � looking after the child, see below. The local authority can also provide the following services to all children in its area, not just children in . need:- � day care facilities for children under five and not yet at school � after-school and holiday care or activities for school age children. Guess how much of this I actually get. Go on, I'll give you a few minutes. Did you guess "none of the above"? That would be correct. I get none of this. No help for transport to appointments though it's supposed to exist. No help to after school activities. No respite. No holiday care. No home helps. What I do get is scoffed off whenever I ask. And, apparently, what I also get is monitoring to see when it's time to take my son away from me and place him in care. That's the other scary bit about having a Child in Need; it seems the authorities are poised to try and take a child away but not to actually put anything in place which might have prevented this in the first place. Because I have missed appointments - these comprise of three hours of preparation for a ten minute appointment of saying the same things over and over again to different people - I couldn't get my son to due to both his and my condition, this is seen as "neglect". My son's behaviour at school escalated to such a degree that of course their first reaction was to blame abuse at home, which is a completely laughable prospect for anyone who knows me. It couldn�t be because, well, my son hates school. I've been seeing a lot of denial - maybe this is an English thing to sit back and say "Oh, they'll never do that, it will sort itself out, they can't possibly cut that, it's vital!" It's as if people refuse to believe what is already being discussed in Parliament as happening until it's too late to get angry. And then of course there's the people who aren't disabled and just plain don't think it matters to them. "Taxpayers are getting hit badly too, you know" is a common statement, but as I and others have said before, many disabled people are or have been taxpayers themselves. Right up to the day of the fatal accident, or the biopsy test which came back positive, or the numbness in their limbs became paralysis. And when we were making our contributions, believing that the money we were giving would help us out in the end, we realised suddenly that it wasn't there. DLA is NOT a "benefit". It is funding provided from NI contributions to cover the costs of disability which falls through the cracks of the system. There is no way this numbers into the tens of thousands, either - as outlined by Sue from Diary of a Benefit Scrounger these payments for DLA are paltry. I get a grand total of �350 a month for my son's care, and that has to cover a load of things; bedding for his bedwetting, the supplements he takes for concentration, transportation to countless meetings as the bus is too stressful for him and exhausting for me. It pays the water and the heat bills as the heat needs to be higher in my home due to his penchant to run about naked and his need for frequent bathing due to accidents, as well as for the best food I can buy for him as he eats so restrictively and I have to be sure his diet is balanced. If that sounds like a lot, I've actually got it easy - other people with children who are unable to walk or move independently have to somehow fund bed and bath hoists, wheelchair accessible vehicles (which even through Motability require a massive premium), special clothing for tubal feeds, toileting supplies, petrol costs, eating aids and if one is lucky respite and cleaning help. It's a massive expense and believe it or not, NHS does NOT fund any of these things. That's what DLA is supposed to be for...so when it's removed, what's going to happen? Well, as Ali has already posted in her blog, for many people there is only one final solution. I wish I could say her entry was an isolated incident, but it isn't. The sheer number of blogs and statements I have seen recently on forums for disabled people who are talking about suicide as the only solution is horrifying. I have seen the outcry and demonisation of parents who took their lives and the lives of their autistic children, about what horrible people they were and why didn't they just go get help, etc.,etc. The truth of the matter is the help is not there. Believe me, I know. And I also had my dark days, and one day in particular last summer in which I walked out of my house and didn't come back for nine hours. I gave up entirely and had every intention of just disappearing and leaving my son to whomever happened to call the alarm when I wasn't there in the afternoon. You would have thought social services and mental health and several other groups would have rushed in...but they didn't. I was released from hospital (alone...no one even bothered to call a taxi or get me someone to make sure I got home and didn't just disappear again), a note was put in my file that I was "mentally unstable" - and therefore they could just ignore any pleas I made as melodramatic - and that was that. Nothing changed. Nothing at all. I have had to fight to try and get any assistance at all, and to be quite honest, it wasn't worth the battle. Two years later, and my son is still going to the same completely ineffectual school who is still completely incapable of dealing with his behaviour and rages. Almost a year later, my pleas to social services have fallen on deaf ears and I have been turned down twice for care plans or respite even though I am now completely housebound and trapped indoors. I am on my second DLA application, always having to address issues as either affecting my son or myself as no one seems to want to listen about how everything is affecting us as a family. Nothing changed when I was in hospital twice and had no childcare coverage, nothing has changed even though the consultant sat down and told me "If you don�t slow down you�re going to die of heart failure within a year or two." I am still here, still trying to care for my son, fight for his education, fight for help for myself, fight for DLA, fight to keep working, fight for independence�and all the while I�m well aware all the stress and struggle is just pounding more nails into my own coffin. I have been applauded for working - "Well you must be feeling better then!" as my son's social worker told me yesterday � but I�m baffled that anyone thinks this is because I want to try to burn the candle at both ends rather than because without it my child and I would be on the street. I have been assessed and being perfectly capable of caring for myself and my son because I can garden even though my laundry and dishes were piled up. This is not because I am cured, but because I have little choice. If I don't work, I don't get tax credits. If I don't get tax credits I lose my house, and if I lose that, there goes my way of living. I'll be forced onto a council estate and placed under scrutiny for every move (I hobbled to the post box, therefore it must mean I�m lying about being disabled, quick call the fraudline!) I make to try and force me into a dead-end part time job just to make the numbers balance out. If I can't keep the job (and of course with my energy levels there's no chance I could) I'd lose the council house and benefits. That isn't the future I foresaw for myself ten years ago. I don't think anyone would have done. But here it is, and therefore I am fighting for what few scraps I have to keep doing what I'm doing. I keep hearing people say "Well if you�re going to protest, come up with an alternative." I don�t understand this reasoning � we voted people into power who are supposed to be perfectly capable of finding those alternatives for us. It isn�t our job to do that � it�s theirs. That is what they are elected for, and if they aren�t capable of making these decisions I do wonder why we bother having a voted-in government at all. What�s the point? I�m also rather aghast at the utter silence from the media � how is it that none of these cuts ever reach the news? We�re bombarded almost daily with reports of "caught scroungers" and a few charity pieces, but anything written by people who are directly in the line of fire of these cuts gets ignored. It�s "emotive". Well, so is Egypt, Libya and Japan but it seems to get plenty of press at the moment�why not what is happening here? So, then: what now? Well, if you've made it this far, then you've done the first part; you're actually listening. Now comes the uncomfortable part - picture yourself right where I am, and understand it is not anywhere near as remote a possibility as you think. One night the police could knock at the door with bad news about your son, one day the cough you've had which didn't go away could turn out to be a lot more than just a cough. And of course, like it or not, we are all going to get old, and the older we get, the more susceptible to illness. Living longer does not necessarily mean living well, merely a death considerably prolonged. In other words these cuts apply to all of us; at some point they will apply to you whether you need it yet or not. You're no different from us, nor we from you...it's just we are the ones who reached this point first. Your time is coming, so prepare for it. Think about it, report it�and fight it.

Labels: Advocacy

As I was struggling towards the end of last year and am still hobbling along, the garden towards the fall was allowed to get rather weedish. This afternoon, whilst there was the first bit of sun we've had in a while, I decided to bravely venture outside (and forgot the sunblock, so now sporting 'sunburn') and assess the damage. Not horrible, maybe, but only because everything is dormant right now, though the rose bushes are starting to show some buds. So much out there needs weeding, tidying, cutting, topdressing and probably a few other things ending in -ing.
I only had a little time to work in and I set to with a not entirely peaceful mind as, after four OTs and several applications for Move On Assistance Grants, I've been told that a shower-board and my son's sand-bucket to pour water over me covers all my needs and my grant has now been mooted. Thank you, Big Society; I guess the lack of adequate insulation, dodgy wiring, ancient appliances and fixtures, no smoke alarms and damp are all just minor inconveniences. I'm furious, but resigned - which I guess is where they want me, really. I put off claiming Housing Benefit for seven months because moving house whilst on benefits is rather like being branded with The Scarlet Letter, but now I'll have to claim the backpay.
Regardless, what it does mean is I'm staying and I shan't be giving up the garden now - which is a bit of joy regardless of the state of the house itself. I don't know what I'll do about the front path which is treacherous even when not covered in snow, or the wiring which causes a fair few shorts and which every electrician who has come in has shook his head and muttered under his breath "fire hazard" and "death trap". Not so sure about the appliances and doors and wallpaper, but I'll think of something.
For now though, I have a garden, and I have Halloween cats who have been sunning themselves in the last of the sunlight (it's clouding over now). What I also have now is a housekeeper, gleaned out of some carefully-saved cash to allow me two hours a week of someone else dealing with my house. She accomplished in two hours what I couldn't even dream of doing in a week. I huzzah.
A half hour outside pulling weeds in the mud has worn me out believe it or not, but I'm already thinking and plotting and planning once I get the hard graft of sorting out the clearup is done. And hey, I can grow squash after all!
We'll progress!

Labels: Advocacy, Before, Garden, Languishment

This entry is in regard to all the cuts which are happening with regard to the disabled as per the blogswarm One Month Before Heartbreak. If you're not disabled and therefore think this doesn't apply to you, I ask you to read it anyway. It won't be a comfortable read and it's not supposed to be. It may shock you. It may anger you. If it does? Good, then maybe it might inspire you to do something as neither I, my son, nor anyone like me can fight this battle alone, and we need your help. Please keep in mind that you are not just fighting for a stranger, but for your own potential future. As BendyGirl stated recently in her article in the Guardian: "It might seem too dull or difficult to think about but, remember, we disabled people are the same as you, it's just that we've already experienced our life-altering situation and you are yet to do so."
That's not a very comfortable thought, is it? It's not supposed to be. None of this is "comfortable" but it is also inevitable. And therefore ignoring the possibility and just pouring another cup of tea isn't an option for many people, and chances are you have friends or family who are in just this particular situation or will be soon, without any warning.
The cuts which are coming down to the disabled are appalling and devastating; most of them haven't even been announced to the public but we've been finding out about them through various charities and our own hard work gleaning through reports.
The cut of DLA for 25% of people currently claiming (this number up from the 20% which was quoted late last year), the abolition of the Independent Living Fund (people now will go into homes instead which is even more expensive)the removal of DLA mobility for any disabled person in a care home (stranding people in their care homes)the abolishing of autistic children sent to private schools for autism via council funding (however the axing of funding to actually educate people how to deal with autism has also been put forward)the regular review of all disabled cases whether one's condition will change or not (why review someone who has MS or cerebral palsy to see if their condition has miraculously become better?)the abolition of free bus and taxi passes (transport to work? Nope, gone)the cuts to council funds for home care plans (so help to live at home? gone)the removal of funding through Access to Work to small businesses, self employed disabled people, and middle companies (which previously allowed the disabled to work in the first place)the cuts to housing benefit which will place rent at only 20% below retail (and due to this letting agencies now no longer rent to anyone claiming housing benefit...yes, that's illegal, but they're doing it)the end to secured council housing so you have to move within 2 years (move WHERE? that portion of the question hasn't been answered yet)These are just the cuts we know about...however there are actually many more, quite a few which have to do to cuts with ESA and council funding which do not fall directly under the label of disabled funding but will certainly have a knock on effect. For example, legal aid funding which would help protest the discrimination of being on housing benefit and renting to private landlords? Gone. Likewise for attending appeals for DLA or benefits wrongly denied. Gone. Anyone under the age of 35 to be required to live in a bedsit instead of their own apartment if they are on benefits, disabled or not (and I'd say it's a safe bet many disabled people would not be comfortable with room-mates, let alone whether those room-mates would take advantaged of a disabled person; and how the hell is that going to be accessible?). The list goes on, and on, and on.
I'm stunned; stunned that this can be happening, much like many other people are who weren't even aware of any of these cuts.
But I think what stuns me more is the sheer complacency of the British public which has yet to raise any serious outcry to these cuts, even the disabled themselves.
I've been seeing a lot of denial - maybe this is an English thing to sit back and say "Oh, they'll never do that, it will sort itself out, they can't possibly cut that, it's vital!" It's as if people refuse to believe what is already being discussed in Parliament as happening until it's too late to get angry. And then of course there's the people who aren't disabled and just plain don't think it matters to them. "Taxpayers are getting hit badly too, you know" is a common statement, but as I and others have said before, many disabled people are or have been taxpayers themselves. Right up to the day of the fatal accident, or the biopsy test which came back positive, or the numbness in their limbs became paralysis. And when we were making our contributions, believing that the money we were giving would help us out in the end, we realised suddenly that it wasn't there.
DLA is NOT a "benefit". It is funding provided from NI contributions to cover the costs of disability which falls through the cracks of the system. There is no way this numbers into the tens of thousands, either - as outlined by Sue from Diary of a Benefit Scrounger these payments for DLA are paltry. I get a grand total of �350 a month for my son's care, and that has to cover a load of things; bedding for his bedwetting, the supplements he takes for concentration, transportation to countless meetings as the bus is too stressful for him and exhausting for me. It pays the water and the heat bills as the heat needs to be higher in my home due to his penchant to run about naked and his need for frequent bathing due to accidents, as well as for the best food I can buy for him as he eats so restrictively and I have to be sure his diet is balanced.
If that sounds like a lot, I've actually got it easy - other people with children who are unable to walk or move independently have to somehow fund bed and bath hoists, wheelchair accessible vehicles (which even through Motability require a massive premium), special clothing for tubal feeds, toileting supplies, petrol costs, eating aids and if one is lucky respite and cleaning help. It's a massive expense and believe it or not, NHS does NOT fund any of these things. That's what DLA is supposed to be for...so when it's removed, what's going to happen?
Well, as Ali has already posted in her blog, for many people there is only one final solution. I wish I could say her entry was an isolated incident, but it isn't. The sheer number of blogs and statements I have seen recently on forums for disabled people who are talking about suicide as the only solution is horrifying. I have seen the outcry and demonisation of parents who took their lives and the lives of their autistic children, about what horrible people they were and why didn't they just go get help, etc.,etc. The truth of the matter is the help is not there. Believe me, I know. And I also had my dark days, and one day in particular last summer in which I walked out of my house and didn't come back for nine hours. I gave up entirely and had every intention of just disappearing and leaving my son to whomever happened to call the alarm when I wasn't there in the afternoon. You would have thought social services and mental health and several other groups would have rushed in...but they didn't. I was released from hospital (alone...no one even bothered to call a taxi or get me someone to make sure I got home and didn't just disappear again), a note was put in my file that I was "mentally unstable" - and therefore they could just ignore any pleas I made as melodramatic - and that was that. Nothing changed. Nothing at all.
I have had to fight to try and get any assistance at all, and to be quite honest, it wasn't worth the battle. Two years later, and my son is still going to the same completely ineffectual school who is still completely incapable of dealing with his behaviour and rages. Almost a year later, my pleas to social services have fallen of deaf ears and I have been turned down twice for care plans or respite even though I am now completely housebound and trapped indoors. I am on my second DLA application, always having to address issues as either affecting my son or myself as no one seems to want to listen about how everything is affecting us as a family.
I have been applauded for working - "Well you must be feeling better then!" as my son's social worker told me yesterday. I have been assessed and being perfectly capable of caring for myself and my son because I can garden even though my laundry and dishes were piled up. This is not because I am cured, but because I have little choice. If I don't work, I don't get tax credits. If I don't get tax credits I lose my house, and if I lose that, there goes my way of living. I'll be forced onto a council estate and placed under scrutiny for every move I make to try and force me into a dead-end part time job just to make the numbers balance out. If I can't keep the job (and of course with my energy levels there's no chance I could) I'd lose the council house and benefits.
That isn't the future I foresaw for myself ten years ago. I don't think anyone would have done. But here it is, and therefore I am fighting for what few scraps I have to keep doing what I'm doing.
So where do you come in? Well, if you've made it this far, then you've done the first part; you're actually listening. Now comes the uncomfortable part - picture yourself right where I am, and understand it is not anywhere near as remote a possibility as you think. One night the police could knock at the door with bad news about your son, one day the cough you've had which didn't go away could turn out to be a lot more than just a cough. And of course, like it or not, we are all going to get old, and the older we get, the more susceptible to illness. Living longer does not necessarily mean living well, merely a death considerably prolonged. In other words these cuts apply to all of us; at some point they will apply to you whether you need it yet or not.
You're no different from us, nor we from you...it's just we are the ones who reached this point first. Your time is coming, so prepare for it.

Labels: Advocacy