The bedroom tax

The proposed bedroom tax in the Welfare Reform Bill will see people in social housing docked £14.00 a week if they are thought to be under-occupying their property.

“Get a lodger”, suggested Lord Freud in the House of Lord’s yesterday. Well, the truly noble Lord’s and Baroness’s did a cracking job of pointing out why this was such an unsustainable and destructive idea, so I won’t rehash all their arguments here. (They are handily transcribed here…)

I’ll just leave you with one example* of what this new type of household might look like.

Happy families.

* Apologies for complete lack of diversity… Playmobile really ain’t caught up with contemporary UK life.

Being LB’s Mum

Regular readers will know that quite a chunk of this blog focuses on my relationship (and interactions) with LB.  This isn’t to detract from my (or Rich’s) relationship (or interactions) with any of the other kids. It’s just that life with a dude like LB has peculiarities and a difference to it, that are often not really known about, or understood, by people outside of family or close friends.

I’ve been thinking quite a bit recently about being LB’s mum. This is because he is kind of becoming an adult. I say kind of for obvious reasons.  Well I think they are obvious reasons. In my book, he’s going to have to be able to count to ten and cross a road unsupervised before he gets adult status. But maybe I’m wrong.

Being LB’s mum has had a profound impact on my life. This impact has been a mix of good, bad and indifferent. As I’ve mentioned before, LB is a genuinely funny dude. Intentionally or unintentionally, he has been consistently entertaining, he is loyal, loving and delights in certain interests. Being his mum has opened up a world to me that is, by turn, frustrating, enlightening, rewarding and soul destroying. I’ve met a lot of remarkable women who have had to go so much further, in terms of physically and emotionally caring  for their disabled children on a daily basis, than is commonly expected of mothers. These women have a resilience, humour and down to earth engagement with regular, sometimes relentless, sometimes shocking challenges. These challenges take so many forms, it would be impossible to begin to list them, but they are substantial. And life changing. I’ve also met a lot of remarkable people who throw themselves into teaching, or caring for, dudes like LB.

My experiences with LB have motivated me to explore academic areas, and develop a career, that may have passed me by in different circumstances. That is pretty cool. I’ve dived into the disability studies pool, splashed around with other parent academics to help carve out a legitimate space for parents of disabled children in disability studies. And had critical, challenging and stimulating discussions and debates along the way.

The bad has been (largely) caused by crap, poorly organised, non-existent or overly bureaucratic support. It has also related, at times, to his behaviour or actions but we won’t dwell on that now*.

Now he’s heading into a different space. A space that is a little bit uncertain. Some things ain’t changed. One of us has to be here everyday after school. He still needs a babysitter if we go out. He still needs prompting to get dressed and clean his teeth. But chucked into the mix now is shaving (shudder), sex education (“Mustn’t get pregnant Mum”), sick notes from the doctor and more surveillance from the state in the form of Atos nonsense questionnaires** and interviews.

Being LB’s mum is different to being the mum of non-learning disabled children. Instead of having a cracking old cry, waving him off to university or wherever, the boy ain’t going anywhere for the forseeable future. We are in for the long haul. That’s fair enough in a lot of ways. But the worst, truly awful and distressing aspect to being LB’s mum is thinking about the future. I know, from speaking with a lot of other parents, this is the biggy for most parents in this situation.  The ‘I really can’t bear to go there’ issue.

That is why I am so enraged at the proposed erosion of the welfare state by a government who have no understanding of what lives are like on the disabled (or chronically ill) side of the fence.

It’s wrong. And damaging in unmeasurable ways.

 

*But as a taster run with aggression, tantrums that have raised the ceiling in substantial supermarkets, a sleep pattern that would flummox a torture regime and low level, continuous questioning. Of everything truck and bus related.

**For a future comedy post.

The Truly Disabled and the fakers

There’s been a right old push recently to present disabled people as a smallish group of The Truly Disabled (TTDs) and the rest, a bunch of scrounging bastards (BSBs).  The proposed Welfare Reform Bill is currently being deliberated in the Lords. In response to measured, well informed authoritative arguments by several Lords and Baronesses, the Welfare Minister, Lord Freud, mumbles and fumbles his way through a load of ill informed guff. This guff is underpinned by a version of the ‘biopsychosocial model of health and illness’. I can’t be bothered to unpack this pseudo scientific model  but basically, the government seem to be arguing that a lot of disabled people/people with long term conditions think (or pretend) they’re sick/disabled but they ain’t really. They just need a bit of a push to get ‘em off their backsides and back into the workplace. The ideal push is to overhaul the benefits system, remove the large numbers of people (BSBs) receiving lower rate of benefits and give TTDs a (slightly) bigger slice of the pie.

Sadly, it seems like a lot of the great British public are more than happy to swallow the ‘country is being dragged to its knees by this army of work-shy, thieving bastards’ line. Why that is, isn’t clear to me. But I bet anyone £1.20 that they’ve heard a version of the story “My next door neighbour is off sick… sick my arse” or “That toe rag from round the corner just got an enormous plasma tv and she ain’t worked for years” type stories on the bus, in the pub, at work, or pretty much anywhere. Any sign of flagging support for this thesis is quickly dealt with by sensational stories, such as Liddle’s ‘Pretend disabled really ARE sick’ (26/1/12, The Sun) or Dellingpole’s ‘The fake disabled are crippling our economy’ (Daily Telegraph blog, 26/1/12).

I’m sure some people do claim benefits/allowances when they shouldn’t. But I think it’s a very small number of people. We are social beings, after all. Work (whether paid or unpaid) is of central importance to our everyday lives. Not being able to work, through ill health or lack of jobs, is demoralising, depressing, frustrating, dissatisfying and can lead to feelings of meaningless.  Here’s an extract from an interview with a man diagnosed with Asperger syndrome*;

What do you with your days now then?

Waste time. I feel that I am wasting time. Make things to do really. I make things to do. There is no structure in my life. There is no structure. I don’t have to do anything, you know. It is not laziness I mean people could think it is laziness but it is to do with… I walk around in a sort of state of muddle, muddlement, you know, I am very often muddled… It sort of paralyses you. I don’t know if there is a better way to put it…. it is a lack of clarity, lack of clarity of thought. It is like a lack of perspicacity in my thought even…. You know I manage to fill my days. I fill my days in bloody Tesco’s and wandering around and reading bits and not reading anything properly in depth but just reading bits of this and bits of that you know. As I said, I have got the French and German newspapers and that. But it is all bits here and bits there. It is not, there is nothing constructive about it. Nothing structured about it. Nothing, you know, it is just filling in time.


I could go on and on, chucking out stats, referencing the Spartacus report (funded, researched and written by disabled people)  that lays bare the deceitful spin operated by the government in relation to the Welfare Reform Bill,  ask how the BSBs will be distinguished from TTDs in practice, demand to know how a cabinet made up of 23 millionaires (and probably 3 ‘pretty damn rich too’ ministers) can possibly have any understanding of the lives of  disabled/ill people, etc etc etc. But I won’t. I’ll just have a little thinky about how this will all pan out in the end.

According to Freud, getting back into the workplace (cough cough.. I know, I know… but let’s just pretend there are jobs for now, eh?) will ‘cure’ this group (AND help them bring up less feral children AND maintain their relationships). In practice of course, it will lead to (even more?) grinding, heartless, miserable, impoverished lives for a lot of people (and their families) and increasing health, social and economic inequalities between the rich and the poor.

And what about TTD? This gleamingly innocent, honest, worthy, hugely dependent group who will get a (well deserved) rise in their benefits? Well as far as I can see, they will be on a fast track to being patronised and pushed even further to the edges of society. After a few sensational, pathetic, heart wrenching stories are splashed across the media to make everyone feel better, of course.

*Interview extract from the Life on the Autism Spectrum section on Healthtalkonline.

Karaoke-gate

Cripes. I didn’t anticipate this blog would become overtly political or polemic. Sorry. Though maybe it was just a matter of time. I’ll create a new category so fun-loving, chilled readers have the option of ignoring these more confrontational, thornier, issues.

So, what’s the story? Well, here’s the Daily Mail, and Guardian blog version of what happened this week. To summarise, three guys with learning disabilities were refused the opportunity of taking part in a karaoke evening in their local pub because one of them in particular, James, ‘shouted instead of singing’.  They had taken part in karaoke evenings for six months before the landlord changed and their involvement was blocked.  The new landlord sticks by his story that  his decision to exclude their participation relates to their (in)ability to sing, rather than their (dis)ability. Continue reading

(More) tales of the unexpected

Wow. I am reeling. Seriously in shock.

We’ve seen LB onto his school bus (which is now a car) for years and years and years. I’ve lost any inhibitions about being seen in public (and we live on a very public street) in pyjamas, daggy dressing gowns, frightwig hairhead as I’ve waved him off. And he’s never once waved back.

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The T word

I’m seriously starting to hate the T word. Trans-fucking-ition. Professionals (teachers, social workers, clinicians) drip it into conversations with big nods and concerned faces.

“We need to talk about transition,” they say, before disappearing out the door.
“How old is LB now? Mmmm…
nearly in transition then.”
“I’ll make an appointment around seven months before his 18th birthday, so we can really start to discuss transition. But you should be thinking about it now.”

OK. I’m thinking. Think think thinkety think.  Er. I’m struggling a bit here. What am I actually supposed to be thinking about?

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The big ‘got’ question

Oh dear. I suspect this is where my whimsical, cheerful little blog may get a teensy bit controversial (again).  I’ll try and find a nice, fluffy photo for the end to soothe any tensions raised. So the question is; can you ask a disabled person “What have you got?” Someone I know was asked this question the other day.  “EEEEK” “Shit! That’s outrageous!” “WTF??????” Were the sort of responses from other people when they heard (with a bit of swear embellishment). The question asker was an adult.

I’ve been thinking about this and am a bit undecided.  Well I sort of do know what I think, but I know what I think flies in the face of a lot of thinking, conceptualising and theorising about disability.

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The carer’s assessment

Real time blogging these days. Freshly hatched happenings.  The carer’s assessment which took place this morning. My first ever carer’s assessment – shame on you social services – after 13/14 years of social/health care dealings.

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The disabled parking police

He he he… Told Rosie I was going to blog about my days as a disabled parking police person this morning.

“I remember those days!” she replied, having a bit of a chuckle into her doughnut (probably as relieved as fuck that she’s about to leave this madhouse for university). “Especially that time with that man outside….”

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Making a statement

Holyfuckingmackeral. It’s Statement of Special Educational Needs time again. The annual misery that is reading through some faux authoritative representation of LB and declaration of his ‘educational needs’.  All bullshit really.

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