Language, careless statements and exclusion

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During today’s Prime Minister’s Question Time, Cameron made the statement; “We know that through the phonics scheme that my right hon. Friend the Secretary of State for Education (eh? who?) is leading on, that we can teach reading so that no child is left behind.”

No child? No child? Eh? What about all the kids that will never be able to read Dave? Wow. Excluded. Totally written out of the picture. A whole section of the population. In a statement recorded in Hansard.

I got to thinking. Does that mean that those children who will never be able to read are a different sort of child? Not ‘children’ at all. As we know it (Jim)? How could he make such a statement, particularly having had a disabled child himself?

Mmm.

My thoughts led me to this position; Cameron talks an awful lot of crap all the time, but in this instance, he is probably making a statement that would be received, uncritically or even unreflectively, by many. He is making a statement that would probably not raise an eyebrow if you didn’t have a disabled child, or be disabled yourself.

For parents of disabled children, and others, the exclusionary dimension to statements like this, are regular reminders of how narrow accepted types of children are. Statements like this, whether by an authority figure, next door neighbour, best mate or the person sitting next to you on the bus, happen all the time. There are children. And there are children who are erased from mainstream consideration. It comes back, in part, to Mary Douglas and festering. 

This leads to all sorts of emotions – anger, distress, rage, depression, fury – relating to the consistent, collective, careless dismissal of our children. Our children, just like any other children. Only different. It’s hard to put into words,  but it’s like not only being regularly told that your child is crap in various ways, over the years, but also  to turn round, when you ain’t expecting it, and see that once again, they have figuratively been tossed onto the rubbish pile. I don’t think people are being insensitive really. Often it’s an unintentional act or response.

There was an interesting article in the Independent today about the proposed changes to educational provision for ‘SEN’ children. This was summarised (I’m guessing) in a title created by someone other than the author, Lisa Markwell;  It’s her needs that make my daughter special. For an article to be included in mainstream press about disabled children, I always get the sense that the editor, or sub-editor, tries to cuddle it up (or snuggle muffin* it) in some ‘expected’, ‘slightly sensationalist’ language that is crap. I can imagine that people who write these pieces weigh the benefits of getting something ‘out there’ to extend awareness and understanding with a shit title that, at the same time, reinforces existing understandings and awareness. It underlines the same dominant understanding of difference that needs to be coated with a saccharine pill to to be palatable.

Anyway, I’m going to keep making visibile these instances. Probably tediously to a lot of people. But in the hope that the odd person thinks ‘Hey, Dave, what about those kids who won’t be able to read?’ And reflect on what that means.

*Thanks to Molly for this expression.

Lorry heaven and teatime

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“…. and there’s two! Two Scania’s… Ahhhhh.. lorry heaven. I’m in lorry heaven. Oh my god! It’s got my name on it!!!”
“LB, can we talk about something else at teatime? Something me and Tom are interested in?”
“But I love lorries Mum. I’m in lorry heaven Mum.”
“I know. But just while you eat your tea. Talk about something else to be sociable.”
“Sociable Mum? I don’t want to be sociable Mum.”
“Why not? You were obviously sociable last week on your school trip.”
“I know Mum. But that’s because there were people to talk to Mum. People to be sociable with Mum.”
“Well be sociable with us!”
“Ok Mum. Sorry Mum. I’ll be sociable Mum.”
“Good.”
“Do you like lorries Mum?”

Festering

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Mary Douglas. An old favourite of mine. Author of Purity and Danger. Mary (I think I can call her that) argues we categorise things in order to create a sense of order. That we can’t categorise, is pushed to the margins. And becomes ‘other’, creating feelings of revulsion in “us”. Of matter out of place. Bit like walking round a cattle field then putting your wellies on the kitchen table. Or cleaning the kitchen sink with the toilet brush.

Ah. Why am I rambling on about this? Why indeedy. Because of two articles published today.

First, Ian Duncan Smith wrote about his determination to get rid of Disability Living Allowance; “I’m not too scared to light the fuse on disability reform” (now with inflammatory sections removed). Making a series of inaccurate statements, and drawing on made up statistics, he said;

“70% [of people on DLA] had lifetime awards, which meant that once they got it you never looked at them again. They were just allowed to fester.”

So here we have the Work and Pension Secretary suggesting that disabled people ‘putrefy and rot’ or ‘generate pus’. Pus. A perfect example of matter out of place. And one that engenders revulsion.  Not only that, but disabled people choose to fester and “we just let them”. The old us and them that is becoming the defining feature of this government.

Cristine Odone hot on Dunky’s toes, produced (in about 15 minutes by the look of it) a nasty, made up little piece; “Smith must not give in to the disability bullies.”

Now it’s not clear whether these disability bullies are part of the “truly disabled” she refers to (the blind who get less than the drug addicts and alcoholics), or the gang of “back ache fakers who stay off work, earning money to do so.”  Whatever, they are prepared to take extremist tactics to stop changes to benefits. These tactics? Marching in central London at the weekend.

Being labelled cruel and insensitive to the plight of others is a politician’s nightmare. The disability lobby includes politically-savvy activists who know this, and know just which buttons to press. Like PETA, the animal rights lobby, these campaigners are prepared to fight dirty in their effort to embarrass the authorities into doing a U-turn. Emotional manipulation and shock value are routine in their demonstrations; this will only increase if IDS stands his ground.

Well Odone is, like IDS, reinforcing Douglas’s work very nicely. She talks about playing dirty and compares disability campaigners to animal rights campaigners. I’m making no judgements about animal rights activists here, but I don’t think throwing fake blood on the pavement, or wearing gloves to symbolise cutting off hands, compares to some of the strategies employed by PETA and other organisations. Far from it.

Douglas suggests that ‘we’ can respond to ‘anomalies’ negatively or positively;  ignore or condemn them or effectively embrace them by creating a new reality that includes them.  Dunk/Odone’s position is clear. Condemnation.

Me? I’m left feeling revulsion. About a government who are increasingly matter out of place.


LB’s speech

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LB was a school camping trip* last week. He’d prepared a speech but I had to get him just before the end presentations. So here it is;

I liked talking to Becki.
I really liked telling everyone jokes.
My favourite part of the week was looking at the lorries in Dover. I was in lorry heaven.
Thank you and goodbye.

A cracking speech.

*Thanks Amy, Alex, Rachel, Kane and Vicki! Camping in torrential rain all week (and a 4am start for a day trip to France) is way beyond the call of duty. As usual.

Sick notes and excuses

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Had a ‘chuckle’ this morning while reading tweets from mothers about their disabled kids off sick (or not) from school. It reminded me of past experiences. A key task for parents of disabled children is to weigh up your child’s ‘sickness’ status and manage nursery/access because the ‘sick bar’ is lower for disabled kids. LB now has an indefinite sick note (have I mentioned that before?) but he wasn’t any more unwell than most kids when he was a tot.

In those days, he went to the university nursery a couple of days a week while I did my degree. They soon found him a bit of a handful (despite talking the talk in terms of meeting his needs) so staff regularly contacted me to collect him. Fifteen years ago of course, mobile phones were a bit of a rarity so the nursery staff had my lecture/seminar timetable to track me down. It was pretty frustrating to get hauled out of lectures to go and pick him up. Regular heart sink moments.

“He seems a bit under the weather. We think you should take him home for the rest of the day”, they would say, handing over a grumpy little parcel of healthiness.

Halfway through term though it was reading week. Whoo hoo!!! No timetable just uninterrupted study time in the library. Such a treat. One day, after about half an hour of reading, there was a tannoy announcement in the library;

“Would Sarasiobhan please go to the nursery to collect her sick child. Sarasiobhan to the nursery please.”

Unbloodybelievable. Seriously???? You have got to be kidding me??? I sat there, surrounded by books, in my chilly little study carel thing, feeling like I had a massive arrow over my head indicating it was me. Of course, in a university of 16,000 students, no one had a clue who I was but I felt completely exposed. I packed up my stuff and wandered out of the library. Furious and frustrated. I walked about for a bit wondering if I could ignore it. “If only I hadn’t gone straight to the library..” I muttered to myself. I went to get a coffee in a cafe. Standing in the queue, deep in thought about my options, I vaguely noticed an A4 sheet of paper pinned to the noticeboard by the till. In large black font was typed;

“Urgent! Would Sarasiobhan please go to the nursery straight away to collect her sick child.”

Eeek!!!!  Game over. It was clearly serious. I legged it over to the nursery, dropping books and bits of paper, feeling guilty about the wasted ‘fume’ time.

“Ah hello Sarasiobhan.  I’m glad we got hold of you. LB seems a bit under the weather so we thought you ought to take him home for the rest of the day.”

[…]

Thinking about it, I’m not sure that indefinite sick note did start in November 2011.

Signed off sick

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Part 3 of the ESA drama kicked off this morning. (Earlier episodes can be found here and here.) As usual, the vile brown DWP envelope arrived on a Saturday when the helpline is shut.

A summary of the story so far;

I accidentally discovered LB was entitled to Education and Support Allowance (ESA), got a sick note (A) from the GP. He wrote ‘indefinite’ for the length of the illness. A second sick note was requested (B) to backdate the first sick note by 3 months. A 20 page questionnaire needed to be completed for some shitbag company called Atos. JobCentrePlus only keyed in the details on B (Nov 11 – Feb 12) and suspended his allowance almost as soon as it was paid.

At this point, I couldn’t disentangle what was incompetence from what is a cynical and deliberately obstructive process, designed to obscure people’s entitlements and make it as complicated as possible to claim. And as for ‘sick notes’? Anyway, it was sorted. I thought.

Until today’s letter stated;

I am writing to tell you that the medical certificate you sent us, which covers the period from 17/2/12 to 10/5/12 is about to run out. Please send us another medical certificate by 11th May if you are still sick and cannot work.

Whaaaa???? You gotta be kidding me?????

After some raging about JCP incompetence and vile, cynical obstructive systems, I googled ‘medical certificates and ESA’. On a handy forum, rightsnet, the relevant regulations were highlighted, stating that two three-month sick notes need to be produced by the GP before an indefinite one can be accepted. Ah. So now I know.

But what do I know? What’s the basis for these time regulations? Why so many hoops? And how much does it cost to administer such a clunky, overly-bureaucratic and obstructive process? A process that is not fit for purpose for learning disabled people.

I don’t want to be part of a society in which dudes like LB are issued with ‘sick notes’ to exempt them from the workplace. He is not sick. He could thrive in a particular environment in which his strengths and abilities were encouraged, developed and valued. Instead his future, his potential and possibilities are constrained before he’s even finished school. By a system in which he’s already signed off sick. Indefinitely.

Zombie night

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Richy went to watch zombie films this evening.

LB combed his hair. He combed his hair all day because he thinks it’s got bits in it.

Tom watched the end of Harry Potter.

Me? I read some Eva Kittay stuff.

And Stan and Bess waited. And watched.

The IEP

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LB came home with his Individual Education Plan today. The first target is;

I will introduce myself at the beginning of a conversation with new people.

“Ooh, that’s a good first target, LB. So what are you going to say when you start a conversation with new people?”
“Dunno Mum.”
“You’re going to introduce yourself….”
“… how about me and Mum show you, LB? Pretend we don’t know each other and we just bumped into each other in a shop….”
“Hello, I’m Sarasiobhan.”
“Hello, I’m Tom. Pleased to meet you.”
“Your turn, LB. You bump into me in a shop. What do you say?”
“Hello Mum.”

So to the future..

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I’ve been trying to avoid thinking about this, because the future does not look rosy at all. But it’s gotta be done.

The facts:

  • LB is 17.5 years old.
  • He can stay in his sixth form until he’s 19.
  • There is a possibility he can attend a local college for a one year, two day a week, course.
  • After that, nothing.

Considerations:

  1. What is this funny, hugely bright in some very specific ways (but not in any ways that are recognised in the workplace), young man going to do with his life?
  2. Whose is responsible for his care when he’s an adult?

I dread to think what LB is going to do. His current social worker (soon to be replaced by a transition social worker) said that the best we can hope for, is to make personal contact with a local small business/enterprise and organise paid carers to support him in some activity with them. Wow. The provision of support and services for learning disabled people is clearly cracking in the 21st century. I can’t see how this local work activity (if any were available) can be organised without a huge investment of time and goodwill. Whose time and whose goodwill? And with a high level of ongoing management. Alternatively, he may receive enough of a care package so that we can employ someone to do something with him on a daily basis. Something? What? And where?

Caring for someone in this country is, to be blunt, a pile of crapshite. The use of the word ‘care’ muddies things and allows a persistent level of exploitation that is completely unacceptable.  Carers are paid £58.45 per week on the basis of a 35 hour week. How we can possibly distil the work carers’ do, often 7 days a week, on call for 24 hours a day, into a ‘working week’ is plainly wrong. If you earn over £100 a week, you don’t qualify for carer’s allowance. It’s an all or nothing jobby. And as for carer’s assessments (introduced circa 1995) to enable carers’ to say what would make caring easier for them?? I’m still waiting to have one.

Ironically, LB will probably (possibly? who knows with the current cuts in welfare) be given a care package involving direct payments that, in principle, allows him (that is, us) to buy care from external people. These people are currently paid between £7 (daytime) and £10 (evening) per hour. Unlike informal carers, there is a recognition that working in the evenings should involve a higher hourly rate. The rule is that direct payment cannot be paid to anyone living in the same house as the person they work for. Mmmm. Well we wouldn’t want to acknowledge the work informal carers do, would we? Direct payments also involve a lot of bureaucracy, recruiting staff, form filling in, tax, national insurance, and so on.  Employing people involves time, interaction and a blurring of public and private boundaries in the home.

As I work full time, I don’t get carer’s allowance. There is no acknowledgement of the work I/we do, and will continue to do, looking after LB. There is no recognition that, unlike most parents of 17 year old children, one of us still has to be at home every day, ready to let LB in or collect him from after school club. This will continue for the next two years until he leaves school. And then what? He will, if lucky, be occupied two days a week at college for a year. No doubt starting around 9.30am, finished by 3pm with extensive holidays thrown in. He can’t be left home alone, so there are serious implications for maintaining full time employment.

I’m not overly optimistic about the paid carer situation. LB’s recent 12 week stint with a ‘peer buddy’, organised by a local care agency, was filled by a 50 year old man. At this point in time, I refuse to even think about a day centre. Years ago, LB used to say that he’d been to day care with Mr Galpin. It turned out that the social services transport he had at the time (the ill bus), collected a very elderly man after LB and they took him to the day centre before taking LB on to school. The thought of a 19/20 year old young man hanging out in that environment is a beyond dread kind of thought. It ain’t gonna happen.

So what are we left with? Fuck all really. Patchy bits of uncertainty and an unacknowledged expectation that parents will do a hell of a lot of work to make do and mend, on a daily basis. As for what LB will do with his life? That clearly is not an important feature of policy or practice.

Checking the football scores

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“….pushed me off the computer. He doesn’t get enough exercise. No he doesn’t. He’s not healthy. He goes for me all the time. And for me it’s horrible. It’s very, very hard for me…”
“Eh, what you talking about LB?”
“Simon, Mum. He got annoyed with me Mum. He pushed me off the computer Mum.”
“Aww. That’s not very nice. What happened? Did he get told off?”
“Yes Mum. He got put in time out Mum.”
“That’s OK then…”
“Because he wants to go on it all the time Mum. All the time, checking the football scores Mum. The football scores Mum. I can’t let him do that, can I Mum?”
“Mmm… Well you could take it in turns to use the computer.”
“He pushed me off it Mum.”
“Did it hurt?”
“Maaaaay… beeee…. it hurt Mum. AND HE GETS ON MY NERVES! I might get my legal team if he hurts me Mum.”
“I thought he’d left school a while ago?”
“He has Mum. He’s at college now Mum.”
“So when did all this happen?”
“Dunno Mum.”