Monday, 30 January 2012

Welfare Reform and Disability Discourse

I’ve been meaning to write about the government’s Welfare Reform Bill for a while now. But then I’ve been meaning to do lots of things for a while now.

To be honest, I’ve felt a little under pressure to comment on it. There’s a lot of noise out there about it and so far I’ve kept quiet. I think some people think this is a bit odd, especially given that I’m not shy about commenting on other issues that are less close to home. But it’s precisely because it’s so close to home that has made me reticent. In simple terms, it’s yet another fucking thing we have to worry about. And really, we don’t want, or need, another thing to worry about.

As far as the bill goes – specifically the changes to Disability Living Allowance – I’ve no idea whether reform is needed. But of course, if you look at anything hard enough you can always find something to tinker with. There’ll always be some mean-spirited bean counter who can make a case for reform. That shouldn’t surprise us.

What I do know for certain, however, is that many disability campaign groups are opposed to the reforms. And really, that’s good enough for me.

What I despise most about this bill, about this government, is the way they’ve managed to ramp up the hatred – and it is hatred – towards disabled people. I’m not of the opinion that the government solely creates this hatred, by the way. I think it’s there and I think it’ll always be there. There are a lot of hateful, ignorant, spiteful people out there and, in effect, they’ve just been given more of a green light to talk negatively about the disabled. And boy, are they going for it.

The government allows these attitudes to prevail, of course, because it makes it easier for them to push reforms through. That’s the grubby world of politics for you.

As we’ve all seen, negative attitudes towards the disabled are now everyday fodder for the mainstream media. In The Sun last week Rod Liddle wrote a column about the ‘fake disabled’. You can read that here. And as a follow-up, and partly as a defence of Liddle, James Dellingpole wrote this piece here.

They, and their supporters, defend those pieces on the grounds that they’re quite clearly talking about people who aren’t actually disabled. They’re not talking about genuinely disabled people. This, it seems to me, is quite disingenuous. The first thing I have to ask is: what is it that motivates both of these high profile writers to be so determinedly vitriolic about something that, in reality, accounts for very little in financial terms? I’ve seen figures bandied about that suggest that only 0.5% of disability benefit claims are fraudulent. Yes, it’s a problem. But surely not enough of a problem. Why not, instead, focus on real villains, real fraudsters?

The second thing that bothers me about this ‘debate’ is that something fundamental is being missed: the flipside. How come, whenever there’s a discussion about disability benefits, there’s never any mention of those disabled people who either don’t claim benefits at all or not everything that they’re entitled to? How come there’s never any mention of people who, while disabled and perfectly entitled to benefits, fight against the odds to work?

To get personal for a moment: my father lost his left leg, above the knee, in a motorcycle accident when he was 34-years-old. That was thirty years ago. He doesn’t claim benefits and he doesn’t even, even though he’s fully entitled to one, have a blue badge for his car. He works and he’s always worked.

Or my ex-father-in-law who was almost killed during military service forty years ago. Who, despite losing an arm and an eye, went to university and trained to become a teacher. Which he did for many, many years.

Or the group of severely disabled people I met who have formed their own group to help themselves and other disabled people live as full lives as possible, without help from other sources.

The thing is, while I know these are just personal examples, it’s not too much of a stretch to guess that there are many more disabled people out there like them. People who, like my father, probably don’t even think of themselves as disabled. By working, by getting on with their lives, they’ve continued to contribute their taxes and taken nothing from the state.

(I’m not saying, by the way, that that’s how it should be. If I’d lost a leg or an arm or an eye, I can’t imagine I’d be so willing to get out there and work. That’s just the kind of people they are.)

Like I say, what I find most depressing about this issue is that, of all the things in the world to be worried about, people are worrying about disability benefits. It’s the wrong target. And it’s the wrong target partly because we’re such a long way from talking about disabled people in a way that’s positive and inclusive. Whenever we – and it is we – talk about them as we do, we merely ensure that they remain in the margins, as outsiders for us to project all of our spite and fear and hatred and misunderstanding on to.

I’d like to suggest that we leave them alone. And find someone else to pick on.

NB: I think I should make clear(er) that I'm not suggesting that the ideal is that disabled people should get jobs and not claim benefits. Far from it. Disabled people should be perfectly entitled to benefits and not made to feel that they shouldn't be. The personal examples I used above were simply to provide an opposite view to those extreme, black and white, views espoused by Liddle and Dellingpole. And yes, I'm well aware that many disabled people claim benefits *and* work.

Further, I don't write these blog posts for a living. I write them quickly - very quickly - when I've got a few minutes to spare. So you'll have to forgive me if they're not always watertight.

Wednesday, 18 January 2012

Progressions and Setbacks

It’s been a while since I wrote anything about Maggie and how she’s getting on.

Over the past few months she’s made progress in some areas and had setbacks in others. Which is to be expected, I suppose. Overall, she’s a lot happier and more contented. For the first two years of her life she seemed to always be unhappy. This, we suspect, was largely due to her terrible reflux and digestive issues. She still suffers with all of that but to a lesser degree.

Her general happiness seems to have also been affected by her growing awareness and understanding. As she now responds better to various stimuli, she’s much easier to placate. Everyone who sees her is impressed by how well she communicates and how much she understands. She’s often an absolute pleasure to be with. The only drawback is that she requires – demands – constant attention. Although she is happy for short periods stuck in front of the TV watching Waybuloo. And only Waybuloo.

Her sleeping has been erratic. For a short while she was sleeping through the night. But for the past five months she’s been waking up in the early hours, often for up to two hours, This means that Shannon and I have to take turns every night. Being awake with her in the early hours is still an awful, crushing experience. As I’ve said before, it’s during those times – when we’re tired, when there are no other distractions but Maggie – that it all comes rushing in. The sadness, the fear, the anger, the realisation that she will always be like this. It’s at those times that I often consider just giving up.

She’s made some good progress with eating. We took the rather bold step of deciding to just shove food into her mouth. I felt that the worst that could happen was that she would choke to death or fill her lungs up with food. But as it happened, she coped remarkably well. Her speech therapist assessed her while she was eating and concluded that her swallowing was sound. So there was no need for the surgical assessment that had been arranged. In terms of the actual eating, it basically consists of us pouring diluted custard into her mouth from a special cup. How well that goes depends on her mood and levels of hunger. But on the whole, it’s been a success. We never thought she’d be able to do anything like that. It gives us a little hope for her future.

Her weight continues to be an issue. A few months ago we were very pleased that she’d put weight on. However, she seems to be struggling again. There are moments when we’re changing her that we’re horrified and saddened by how thin she is; her ribs showing, her skinny rope-like legs, her scrawny arms. I think it’s time we looked into, again, her food intake. I suspect that part of the problem is that she was destined, like her sister, to be a big kid. She’s getting very tall (or, rather, long) but not very wide. Unlike a lot of kids with similar conditions, she’s very active. So she burns a lot of calories. Of course, her activeness is often due to spastic movements. Or maybe they’re not. It’s difficult to tell.

She’s been getting a hell of a lot from the various places she visits every week: nursery, school for parents (at Scope) and the Hamlet Centre. Those take up three mornings of her week. She’s very responsive while she’s there and, again, the people who see her are always impressed by her levels of understanding. Above all that is that she obviously loves going there.

I think that’s one of the things that we need to be more aware of – that everything she does shouldn’t always be centred around issues of care or development. It’s equally important that she’s just happy, that she has a nice time, that she’s treated – as far as possible – like any other little girl.

She loves – absolutely adores – rough play. Being swung around or thrown up in the air elicits squeals of delight. It’s just such a lovely thing to see and hear.

She’s enjoying, and sitting better, in her chairs. Although she still screams hysterically whenever we take her out in the car, however short the journey. So she can be taken out in her special pushchair and we don’t always have to assume that it’ll be a nightmare. Sometimes it is. The drawback to this is that Alice then has to walk. Unless we’re both taking the girls out. A simple trip to the shops is often fraught with all kinds of logistical problems. It’d be funny if it wasn’t so frustrating and difficult.

And there: Alice. She’s just something else entirely. Still the happiest girl on earth and so bright and clever and funny and lovely. No trouble at all. She deserves much more attention from us than she currently gets.

Overall, I’d say that things are a little better. It’s hard work still – very hard work – but routines and little progressions make it seem easier. Sometimes. At other times, it’s all too much. We still have moments when we just can’t believe that we have a severely disabled daughter. We look at Alice and can see how Maggie should have been. We still feel robbed and sad and lost. I imagine those feelings will never disappear – it’s just how well we cope with them.

Wednesday, 4 January 2012