0 comment Tuesday, September 16, 2014 | admin
I'm afraid I'm going to bang on about something again - avert your eyes, but what I suspected to be complacency in the wake of the cuts announcement is now turning into something very different.
It wasn't acceptance, it was the sound of people going quiet to gear up for war.
Now I'm not a big ribbon-wearer; I try not to get into people's faces about "causes" unless they ask me. If people are cool with me without sneering about me for having a cane, for not being able to walk far, for my son's behaviour, for my skintone...whatever, right on. I don't strut around like "the only gay in the village" and wait for people to knock the chip off my shoulder. Besides, what is the good of a ribbon? You paid a quid, you pinned it on your coat and then you forgot about it. Big deal.
However, this is no longer about wearing a ribbon - this is now my life which the government is trying to snatch out from under me. Yanno, I've dealt with it before; I've been homeless and was so for several years at a stretch. But mess with my son's quality of life, turn him into a prisoner in his own home due to isolation and lack of accessibility to fun things, turn me into a boring parent because you can get HIM to things but not US as a family so he now thinks of me as not particularly fun or worthy of his love?
The hell you will.
I never would have thought disabled people could get so pissed off, but maaaan, are they pissed. They're mobilising all over the place, including a new campaign called "The Broken of Britain". I've written a piece for that too. The Disabled Parents Network is also seeing an increase in membership, and I am expecting the Disability Law Service to be overflowing with cases (and I'll be calling them myself today actually.
The outcry is huge, and I'm amazed to see it. But I guess if the Powers Wot Be expected everyone to take it lying down, they were wrong. It's good to see and while I think we're all aware that the UK is losing tonnes of money, stripping funds from the poor and vulnerable is not the way to do it.
It's an insane uphill slog, believe me - I've actually become so tired of even trying to convince various social services that I need some help that I'd given up and accepted that they just weren't going to do it. I had even almost bought that my son isn't "that" autistic as everyone tells me. But this half-term has showed me that no, honestly, I can't do it. And no, seriously, my son isn't cured; if he seems very capable, it's due to all the supplements and counter-measures I have put into place over years of research and long, awful days and nights where I had to struggle on and figure out how to manage my wildchild. "Medicated" doesn't mean "cured" - and so he's gone to school without supplements, his usual self, and people will be reminded of this. My cyst infection is back, and now there are two more cysts which are trying to infect. My immune system is shot from stress and if I have to go into the hospital again, there's no coverage for my son.
There are people on various forums I belong to who have been fighting for years for care - and we're not talking about wanting a trip to the Maldives or a summer home in France here; we're talking getting a PA to help them wash, or insert a catheter, or cook a homecooked meal rather than sling a frozen dinner in the oven. Simple, everyday stuff which they probably worked for and contributed NI payments for, and now aren't there. The whole idea of "you volunteer first, and THEN we'll help you later" is just ludicrous. Volunteer when, if you're like most families working dual incomes just to pay off the mortgage? And who trains these people? And why would I want to trust a potential rapist or abuser who hasn't been properly vetted into my house?
I am a realist, possibly brutally so - there was a time when the aged, the mentally ill, the disabled would have thrown onto the street and forgotten; survival of the fittest. That was what tended to usually happen to people like us. It's unpopular to say, but I don't expect in a society which still can't accept skin colour or religious differences to suddenly reach an epiphany and not see the poor or disabled or elderly as a waste of space. That's just the way it is, and the way it will be - to be honest, I cannot think of a worse fate for myself than dribbling blearily in front of a telly screen in my old age. When I reach that point I will leave this world of my own choice - we are an overpopulated planet, obsessed with long life-spans, but quality of life does not equal quantity of life. I'm nearly 40 - less than half what my average lifespan is supposed to be - and I'll tell you right now if I've got another 40 years of this waiting for me, I don't want them.
My issue lies with the assumption that I am a waste of space and incapable of giving anything to the world, that my son will just be a burden for his whole life as well, and therefore it's not worth wasting time or money on either of us. Bollocks: as long as I am still capable of contributing, and while my son has the potential for contribution, no one has the right to write me off. There are a lot of disabled people out there who want to work, and who could do if they had a hell of a lot more support - maybe only support at first, but enough to get things going. I've had several businesses now which I could have continued working and eventually contributing tax for if the Access to Work programme actually, you know, worked itself. If it was more easy to apply, didn't take months before you saw someone to help you make the claim, didn't get equipment and ridiculous expectations which didn't help you, didn't have employers just looking for a way to fire the costly disabled person and hire a hack for half the wages.
So, what does this mean? It means I'm fighting again - and I'm not going to stick a frellin' ribbon onto my clothes and think that's done the trick. It does mean however that I'm not backing down and I'm going to be a very noisy, very irritating thorn in whoever's side I have to jab myself into in order to get acknowledged. It means I'm getting copies of the nursing notes from the district nurse trips, getting all the paperwork from everything I ever filed sent to me written explanations WHY protocol was broken. It means writing to MPs and Councillors and solicitors and local papers and whatever I need to do to raise some dust. It means fighting tooth and nail and claw (and to my horror there's one woman on a forum who has been fighting for 10 years for DLA). It means I'll make noise, in pixelated form, from my daybed. Marching may be beyond me at the moment but it doesn't mean I'll go quietly.
My hep-mama hat is on, fresh out of its plastic bag to keep the dust off it, and I've got it firmly pinned in place.
Bring it on, sonny.
It wasn't acceptance, it was the sound of people going quiet to gear up for war.
Now I'm not a big ribbon-wearer; I try not to get into people's faces about "causes" unless they ask me. If people are cool with me without sneering about me for having a cane, for not being able to walk far, for my son's behaviour, for my skintone...whatever, right on. I don't strut around like "the only gay in the village" and wait for people to knock the chip off my shoulder. Besides, what is the good of a ribbon? You paid a quid, you pinned it on your coat and then you forgot about it. Big deal.
However, this is no longer about wearing a ribbon - this is now my life which the government is trying to snatch out from under me. Yanno, I've dealt with it before; I've been homeless and was so for several years at a stretch. But mess with my son's quality of life, turn him into a prisoner in his own home due to isolation and lack of accessibility to fun things, turn me into a boring parent because you can get HIM to things but not US as a family so he now thinks of me as not particularly fun or worthy of his love?
The hell you will.
I never would have thought disabled people could get so pissed off, but maaaan, are they pissed. They're mobilising all over the place, including a new campaign called "The Broken of Britain". I've written a piece for that too. The Disabled Parents Network is also seeing an increase in membership, and I am expecting the Disability Law Service to be overflowing with cases (and I'll be calling them myself today actually.
The outcry is huge, and I'm amazed to see it. But I guess if the Powers Wot Be expected everyone to take it lying down, they were wrong. It's good to see and while I think we're all aware that the UK is losing tonnes of money, stripping funds from the poor and vulnerable is not the way to do it.
It's an insane uphill slog, believe me - I've actually become so tired of even trying to convince various social services that I need some help that I'd given up and accepted that they just weren't going to do it. I had even almost bought that my son isn't "that" autistic as everyone tells me. But this half-term has showed me that no, honestly, I can't do it. And no, seriously, my son isn't cured; if he seems very capable, it's due to all the supplements and counter-measures I have put into place over years of research and long, awful days and nights where I had to struggle on and figure out how to manage my wildchild. "Medicated" doesn't mean "cured" - and so he's gone to school without supplements, his usual self, and people will be reminded of this. My cyst infection is back, and now there are two more cysts which are trying to infect. My immune system is shot from stress and if I have to go into the hospital again, there's no coverage for my son.
There are people on various forums I belong to who have been fighting for years for care - and we're not talking about wanting a trip to the Maldives or a summer home in France here; we're talking getting a PA to help them wash, or insert a catheter, or cook a homecooked meal rather than sling a frozen dinner in the oven. Simple, everyday stuff which they probably worked for and contributed NI payments for, and now aren't there. The whole idea of "you volunteer first, and THEN we'll help you later" is just ludicrous. Volunteer when, if you're like most families working dual incomes just to pay off the mortgage? And who trains these people? And why would I want to trust a potential rapist or abuser who hasn't been properly vetted into my house?
I am a realist, possibly brutally so - there was a time when the aged, the mentally ill, the disabled would have thrown onto the street and forgotten; survival of the fittest. That was what tended to usually happen to people like us. It's unpopular to say, but I don't expect in a society which still can't accept skin colour or religious differences to suddenly reach an epiphany and not see the poor or disabled or elderly as a waste of space. That's just the way it is, and the way it will be - to be honest, I cannot think of a worse fate for myself than dribbling blearily in front of a telly screen in my old age. When I reach that point I will leave this world of my own choice - we are an overpopulated planet, obsessed with long life-spans, but quality of life does not equal quantity of life. I'm nearly 40 - less than half what my average lifespan is supposed to be - and I'll tell you right now if I've got another 40 years of this waiting for me, I don't want them.
My issue lies with the assumption that I am a waste of space and incapable of giving anything to the world, that my son will just be a burden for his whole life as well, and therefore it's not worth wasting time or money on either of us. Bollocks: as long as I am still capable of contributing, and while my son has the potential for contribution, no one has the right to write me off. There are a lot of disabled people out there who want to work, and who could do if they had a hell of a lot more support - maybe only support at first, but enough to get things going. I've had several businesses now which I could have continued working and eventually contributing tax for if the Access to Work programme actually, you know, worked itself. If it was more easy to apply, didn't take months before you saw someone to help you make the claim, didn't get equipment and ridiculous expectations which didn't help you, didn't have employers just looking for a way to fire the costly disabled person and hire a hack for half the wages.
So, what does this mean? It means I'm fighting again - and I'm not going to stick a frellin' ribbon onto my clothes and think that's done the trick. It does mean however that I'm not backing down and I'm going to be a very noisy, very irritating thorn in whoever's side I have to jab myself into in order to get acknowledged. It means I'm getting copies of the nursing notes from the district nurse trips, getting all the paperwork from everything I ever filed sent to me written explanations WHY protocol was broken. It means writing to MPs and Councillors and solicitors and local papers and whatever I need to do to raise some dust. It means fighting tooth and nail and claw (and to my horror there's one woman on a forum who has been fighting for 10 years for DLA). It means I'll make noise, in pixelated form, from my daybed. Marching may be beyond me at the moment but it doesn't mean I'll go quietly.
My hep-mama hat is on, fresh out of its plastic bag to keep the dust off it, and I've got it firmly pinned in place.
Bring it on, sonny.
Labels: Languishment