Tuesday, 7 February 2012

Dickens: A Warning from History

Today's Dickens celebrations, including the news that Jeremy Hunt gave out copies of Dickens' books at today's Cabinet meeting, have got me thinking about the world he portrayed, and how far we have come since then, especially for the poor, sick and vulnerable.

As I've discussed before, there are a number of challenges having a disabled family member, and we have often reminded our children how different things would have been for my daughter if she'd been born in earlier centuries. 

We come from hearty stock, and most of our ancestors appear to have lived to a ripe old age (although one can't be certain how many babies never made it as far as civil registration - long gaps between birthdates indicate there were some stillbirths.) When I went into labour, my daughter's umbilical cord was wrapped round her neck. After 3 full days in labour and still no progression, despite lots of medical intervention and inducement, she was born by emergency C-section. The chances of a successful outcome for baby or mother under these circumstances in Dickens' time would have been pretty low. Thanks to the NHS, we got all the help we needed in a well-equipped hospital. 

Epilepsy. Nasty condition, and can still be fatal, but thanks to modern medicine it can usually be controlled, even to the point of brain surgery in extreme cases. None of this was available in Dickens' time. It is extremely likely, therefore, that my daughter would not have survived the prolonged seizures she had at 6 months old. It was phenobarbital (1902) and carbamazapine (1965) which helped stabilise her condition. 

Similarly, her Sturge Weber Syndrome (first identified 1879) would not have been noticed as a potentially serious health problem. Instead of losing the sight in one eye, she could well have lost both, as there would have been no healthcare to monitor her sight (every 3 months, from birth).

Of course, an early death would have precluded having to address her autism (a condition which was still a hundred years away from being identified when Dickens was writing). For all those people who say "Why have autism rates risen so much recently?" the answer is, in the main, better diagnosis. In the past, such children would have just been classified as 'simple' and, in an age where a child was effectively an economic unit, a burden on a poor family. High infant mortality would have prevented many such children reaching adulthood, as disease and poor conditions took their toll on those least able to fend for themselves.

So, all in all, better to be born in the 20th century. 

The 21st, however, is looking decidedly less rosy, as attitudes towards those who are "different" are becoming more hostile. Dickens wrote of the appalling social conditions and inequality he saw in Victorian Britain as a warning. His writing inspired social change. Maybe Jeremy Hunt's gifts to his colleagues should come with an inscription that reminds them that these are works of social commentary on a society riven with inequality.... 

....and are not an instruction manual.

Monday, 6 February 2012

Let Them Eat Cake: #5633 in a Regular Series.

Here we go again.....

Maria Miller, the Under-Secretary of State for Not Having a Clue says there is "no shortage of jobs"

Let's leave for the moment that fact that there IS a shortage of jobs (400,000 jobs for 2.96m unemployed is "a shortage" - you'd think, having studied Economics at the LSE, she'd have grasped this). Her assertion that it is down to people's lack of "appetite for the jobs on offer" is insulting to all jobseekers, but especially so for the disabled (or those who care for them) who want to work, but can't.

Many disabled people do work and most want to, if they are able. It is not that their 'skills' do not match; it is the access to and flexibility of these jobs which determine whether disabled people can take them, and too often there is still a mis-match here. Every time you've whinged about the attention a colleague is getting as he's measured for a specialised office chair due to a severe back problem, consider how much more you'd resent him if he gave up work and relied on disability benefits? It's simply not true that disabled people don't want to work. And have you noticed how 'flexible' working almost always means flexibility for the employer rather than the employee?  "Can you fit with these odd work patterns? Then welcome!" 

She's right on one thing - it's not just about the jobseeker, but also their family, and this is particularly important for disabled people, whose families are already disproportionately affected, and where family cohesion is tricky even without the demands of a low-paid, long-hours job.

Regular readers of this blog (and my Twitter followers) will already know how challenging caring for a teenager with Autistic Spectrum Disorder can be. This didn't evolved in a vacuum, though. When she was born, we were much more preoccupied with the diagnosis of Sturge Weber Syndrome, the prognosis for which was very variable and generally not good. Despite this we tried to lead as normal life as possible; I returned to full time work when she was six months old, despite her epilepsy, which manifested at the same time. We were advised at the time to apply for DLA for her, but we resisted, as we didn't feel that the demands on us where any greater than any other child of her age. By the age of three, and within days of starting school, it became clear that there were some fairly major behavioural issues to be addressed (not unknown with SWS). We, and school, struggled for several years to deal with this, and despite her statement and 100% (at one point 200%!) 1:1 support, it was touch and go whether we could keep her in school. Multiple exclusions, regular calls at work for one crisis or another, it was exhausting and demoralising. Her additional ASD diagnosis came in Y3, which helped a little, as we at least knew what we were dealing with and could try and devise strategies to help her. Throughout this time, we both continued to work - we were lucky in having understanding employers (we were also both conscientious and good at our jobs, which helped) and good after-school/holiday provision. Even with support, though, it was very difficult, and took its toll on us emotionally. Still we didn't claim DLA, despite advice from doctors that we should.

Oh. And did I mention the glaucoma and detached retina, which claimed the sight in one eye just before her 11th birthday? We carried on working through the operations, radiotherapy, 60-mile rounds trips to hospital, going cap-in-hand for special leave when we had exhausted both annual leave entitlements. 

Just before she was due to transfer to secondary school, I was made voluntarily redundant from my outsourced, former local authority job. We decided that as school transition was likely to be traumatic, it made sense to live off my severance money to allow me to be available to help her. And so it's proved. I stretched the severance as far as I could, and then - finally - persuaded my partner that we really should claim the DLA to which we had probably been entitled for 13 years. As the claim was approved immediately, without recourse to appeals/tribunals,  I assume I was right on this.

Adolescence isn't easy at the best of times and the additional anxiety and confusion it causes for those on the spectrum is unimaginable to the neurotypical. It would be nonsensical to try and return to full-time work for the next couple of years - she is, if anything, coping less well than she did in Y7, and it is vital that we keep her in school and (hopefully) get her some GCSEs (not the full EBacc - sorry Michael!!) if she is to have any chance of meaningful employment. As it is, her prospects are pretty bleak.

And as for me? Today she said "Why don't you get a job?", seemingly oblivious of the amount of time I expend simply trying to get her to comply with everyday tasks. A lack of empathy, sure, but then, she is on the spectrum. What's the excuse of the general public or their cheerleader Maria Miller?

It is not the skills I lack, Ms Miller. It is the availability of work which I can mould around the needs of my child. I spent ten years trying to juggle work and caring, and I sometimes wonder if I didn't put work before family too often (after all, my employers were paying me and I had entered into a contract with them). Here's what I need to be able to work and care:

Term-time only - Holiday childcare for secondary-aged children is patchy, expensive and of varying quality. Sports camps are not viable, as they require co-operative working in groups, and are frequently noisy. If she struggles in school, where staff and pupils know her, there is little chance of her coping with strange faces and (possibly) unsympathetic peers. There are some schemes for disabled children, but I'm wary of this compartmentalisation and anyway, funding for these is being squeezed. Apart from any other considerations, she finds school mentally exhausting and she needs (as do most teenagers, actually) to use the holidays to recharge her batteries. 

Truly flexible - and no, I don't mean the night shift in a 24hr supermarket. Something home-based, so I can work through the good days (rare) where I get no interruptions, yet be able to drop everything and deal with a crisis. I'm keen and willing to work, but cannot currently commit to standard hours or travelling. With 20+ years' admin/managerial experience, there should be something I could do from home (which, we're told, is the way of the future), but I've not been able to find anything so far. 

Security - the one thing you really can't do where ASD is concerned is introduce uncertainty. Any job I do will need to be sufficiently ordered that it doesn't present too many fluctuations. For that reason, self-employment isn't really a good option. Trying to build a business simply isn't compatible with caring for someone on the spectrum (especially if, like me, you are profoundly non-entrepreneurial). I know, I had a go at it, with spectacularly little success. Given how many businesses fail anyway, and given the dire economic climate of the next few years, you really need to give it your full attention, something you cannot do if you are a carer.

I may be the primary carer, but it's a family enterprise. My partner, after a full day's work, is there to take some of the strain when he gets home, and my younger child accepts that she will be subject to a level of neglect which other children could not comprehend. Her needs are not even taken into account in the DLA application process, although she is massively affected by her sister's condition. To keep the family together (and therefore avoid additional strains on the welfare budget) I need to ensure that I'm there for all of them and when they need me. After all, we want to discourage family breakdown, don't we?

I don't expect to be able to command anything like the salary I did before (which, I hasten to add, was still only just about the national average after 22 years), but we took a 50% cut to the household income to care for our child, so you can't say we didn't make sacrifices. We saved the country 13 years' worth of DLA payments, by meeting the additional costs of my daughter's disability ourselves, despite modest incomes (and yes, I am looking at you, David Cameron).  At present, I'm doing a full-time job for £55pw - no 20 days' annual leave entitlement, no opportunities for promotion, no trade union (although plenty of moral support from my fellow Twitter ASD friends). It's long-hours, I'm subject to regular verbal (and sometimes physical) abuse, and I have no recourse to any protest. We're working, but there is no money for much beyond mortgage, food and utilities. Our sofa needs replacing (the arm has split and the foam is spilling out), the carpets are nearly 20 years old and are getting dangerously threadbare; the recent wet weather has exposed weaknesses in the pointing on the front wall,which is allowing moisture to seep in. None of these will be addressed any time soon.

Now, I'm sure she will claim that she is talking generally about unemployed people , but she is the Minister for Disabled People, and so most people will assume that she is talking about the disabled seeking work. Yet another neat little smear tactic. Seemingly, Miller doesn't make the connection between getting (and retaining) a job and the impediments to that which the Welfare 'Reform" Bill creates. Almost everything she says could be justified if the WRB wasn't undermining disabled people's ability to retain their jobs.

"Every family should be a working family" says Ms Miller. Well, we are, and I am. I find the sneering assertion that I have "no appetite" to work deeply offensive.

Thursday, 2 February 2012

Why I Won't be Joining You for a Drink...

Dear Dad

I know you and mum have always voted Conservative (I don't think I ever met a Labour voter while I was growing up), and that we have, over the years, had our disagreements about politics. I also suspect you wonder where you went wrong with me - and no, it wasn't 

a) taking Sociology O level 
b) moving to Manchester; 
c) falling in love with a socialist 

that made me reject your politics. It was: 

a) working for 6 years for a Tory council (including during the Miners' Strike) 
b) getting away from the Home Counties and seeing how the rest of Britain fared under them
c) working for an inner city local authority

You may not have noticed it, but I had moved to the left before I left Maidstone. I was one of only 4 people of my acquaintance who admitted to voting Labour or Alliance (for tactical voting purposes) in '87. Presumably everyone else thought Anne Widdicombe was a better bet?

Despite our differences (and despite our family discussions sometimes resembling Til Death Us Do Part) we've always managed to agree to disagree. I know you're not comfortable in the north and don't really understand the culture (you think I don't notice that you get twitchy once you hit the M6?), but it's my spiritual home. I came here nearly 25 years ago, and it has felt like 'home' from Day 1. I guess we'll just chalk that up to us being different as well. You brought us up to take an interest in politics and the world around us, and to think for ourselves. Mum always reminded us that women fought and died to get us the vote and that simpering about "not understanding politics" was simply not on. That we eventually came to different conclusion proves that you both did your job as parents, and produced free-thinking individuals who took their politics seriously.

Of course, I should have been ripe New Labour fodder - left-leaning offspring of Tory parents (just like Tony Blair!), but the New Labour project didn't do much for me. Too relaxed about the filthy rich, too keen on bringing the private sector in (has it ever produced a better, cheaper public service? No.). But the nation became, for 13 years at least, a little less nasty, a little less judgemental, a little less selfish. 

Which brings me to the Coalition

And the Welfare Reform Bill.

Of all the ideologically-driven dismantling of the State that this shower are heaping on us, this really is the most venal.


This, dad, is a beautifully-written piece by a disability campaigner who has been trying desperately to prevent the atrocity played out in the House of Commons yesterday. 

She and others have put their own health at serious risk to do this on behalf of people like Sally and Megan (Sue Marsh was rushed to hospital last week, when the campaigning made her critically ill).

Corporate and personal tax avoidance/evasion accounts for far more than this legislation will save, so it will have a neglible effect on deficit-reduction. It's just an act of spite by an un-mandated coalition of those who couldn't get elected and those who came a poor third. None of these 'reforms' were in any party's manifesto and some of the provisions were actively voted against by the Liberal Democrats at their conference and yet their MPs meekly followed the Tories through the lobby to condemn thousands of the most vulnerable in our society to poverty, isolation and dependence on crumbs of goodwill. 

This has nothing to do with "fairness" or "ordinary, hard-working families" (many of whom will actually be clobbered by the changes to Housing Benefit in an unregulated private rental market). When they realised they couldn't win by fair means (by, say, getting their facts straight), they resorted to lying and cheating. The BBC, which you frequently tell me is so left wing? Currently running programmes like "Saints and Scroungers" (ooh, look, Dominic has his cross face on! And look - let's see who "deserves" support!), cementing the impression that fraud is rife (the fraud rate for DLA is 0.5% of total budget), and running news items about families with 7 children. The press and TV has been complicit on doing the Coalition's dirty work for it, by drip-feeding the impression that anyone who receives money from the state is a 'scrounger' (MP's expenses, anyone?). And it's working. Most "normal" people (to use IDS's charming phrase to distinguish them from disabled people) think "Look, they've got a telly. I don't have a telly like that. Why should they have a telly?"

The principle of "anyone who's got something I haven't" determining "unfairness" is becoming entrenched in public life. Just as white supremacists in the Southern US convinced poor whites (whose only 'superiority' came from pigmentation) that black people were out to get their jobs/wives, etc, so the Coalition of Millionaires is convincing people on low incomes that the shit wages they get paid by firms making millions and shunting profits offshore, allowing HM Govt to subsidise their low wages with tax credits, are OK, and that somehow those with no work are somehow getting one over on them. It's not that benefits are too high, it's that wages (for most of us) are pathetically low. Persuading the "dumped-on bottom" to vote against their own best interests is a neat piece of sleight of hand.

Here's another blog, from the excellent Sue Marsh (as above) about their tactics:

As I seem to remember you telling us as kids, life isn't fair. It's not fair that your granddaughter was born with a lifelong disability, or that your energetic, Morris-dancing, 'running two jobs and a family' daughter should be struck down with a debilitating condition in her mid-40s. But governments should be there to shield the most vulnerable from unfairness where they can, and yet the Coalition are happy to simply asset-strip the Welfare State in preparation for their mates in the US insurance industry to come in and make a killing (how likely do you think it is that Meg will be able to get medical insurance, by the way? Pre-existing and congenital conditions will usually rule you out (or they'll take your premiums and then refuse to pay out on a technicality).

You and mum have had long and productive lives, nurtured and supported by the state (rationing to keep you healthy in wartime, the NHS, secure employment, a long, comfortable retirement). You may not have had to call on unemployment benefits, or much other state support (although the Family Allowance was useful), but the State was there, indirectly, for "ordinary, hard-working families" for the whole of your adult lives.

Contrary to what Osborne (that great economic genius) would have you believe, Labour did NOT trash the economy. Certainly they made mistakes (trusting bankers to act honourably being the big one), and, even if they had, there is no excuse for the kinds of cuts the Coalition are making. No-one but an idiot believes that no cuts are necessary, but it's where you make them, and who you hurt the most, which counts. In this case, it seems to be "those least able to fight back." 

I love you both and wish you both continued health - the NHS may just about survive you, but its future doesn't look promising. Whether my generation, or your granddaughters', will ever know job security, secure healthcare or retirement, is looking distinctly unlikely at the moment. The secret appears now to be "be born wealthy."

I survived the Thatcher years and thought we would never again go through anything as bad again, but how wrong I was. Having seen the depths to which the Tories and their LibDem enablers will stoop, I will (to borrow a phrase) never forget and never forgive. 

And that is the reason why I won't ever be able to join you at The Conservative Club for a drink...

UPDATE: In the 4 years since this was published, things have moved on. We now have an even more hateful government than the coalition, for a start. I have occasionally had a drink in the Con Club with my folks (as their advancing age limited their desire to go further afield). Dad has recently been diagnosed with terminal cancer, but we have managed to get him back to the Club for a drink before the morphine makes that kind of expedition impossible. It was a lovely session, with the whole family there (and possibly a record for the number of Socialists present - 4!).

Everything else I've said about the Tories remains valid.