It’s difficult to buy Christmas/birthday presents for a boy who doesn’t really want any presents. And has very, very specific interests – die cast model buses/lorries and the emergency services – that have remained the same for a good fifteen years. We decided to drop the Playmobil option a couple of years ago as it seemed a bit age inappropriate, but these guys are still played with regularly. I thought they deserved a group photo. Love em.
I love Twitter. But lots of people I know, don’t. They don’t get it. They hold onto facebook as a space for sharing stuff with chosen, monitored and policed others. Facebook is more intimate, apparently, and isn’t about stalking Scoph, Stephen Fry or Justin Beiber. Facebook doesn’t restrict status updates to 140 characters. What can you say in 140 characters for fuck’s sake? Well, I’ll come back to that..
I went to a social media talk recently by an expert from York University. He strongly cautioned against our increasing over reliance on social media, saying it would lead to us all creating very narrow social lives, funnelling down, bookmarking our favourite websites and increasingly closing ourselves off to broader social experiences. Facebook can do that. We select certain people that we allow into our circle and can even restrict levels of access to our personal lives. It is static, dated and restrictive.
Twitter smashes things wide open. Even though we choose who we follow, once we follow people, we can’t choose what they retweet to us. So if I was to follow 100 people, and they each followed a hundred people, and so on and so on (I ain’t no mathematician so I’m not even going to attempt to develop this equation/sum), that means I am potentially open to shedloads of information, in bite size pieces.
Yeah, yeah, yeah. I hear you twitter doubters say. What-effer. You can interact via email or facebook. Not as fast or as effectively. Increasingly, Twitter is part of media stories about particular events. Twitfeed is feeding into live tv and news coverage. It’s forcing governments, institutions, people to be more accountable. Through Twitter, a recent petition against proposed NHS reform has got over 170,000 signatures in a few days. Through Twitter a group of disabled people were able to raise funding, research, write up and disseminate their report into the proposed Welfare Reform Bill. Through Twitter (not through the BBC or other media channels) we know that Andrew Lansley’s recent trip to the Royal Free ended up with him being chased by a doc down the corridor to the words “Your bill is rubbish. And you know it!” Through Twitter, people are able to demonstrate and provide evidence of lies, deceit and cheating (largely by the current UK government at the mo’).
What can you tweet in 140 characters? Well, a lot. You’ve just got to be concise, pithy and cut out so much crap that we usually produce/circulate. It’s a liberating experience.
Twitter is what you make it. Depending on who you follow. It can be supportive, political, social, entertaining, funny, informative, creative and always fresh.
Finally, for mates that have shouted ‘help!, I don’t know how to use it’.. here are a few things that I’ve learnt in the last few months (or days;);
Now, if someone wants to let me know the best way to manage lists, that would be great.
I’ve talked about LB’s broader diagnostic journey before. Today I’ve been thinking about the way he has been put on (and off) the autism spectrum. I had a shufty through his medical records (a source of bafflement, frustration and ‘what the fuck?’ moments) and traced autism through the various reports. So, starting when LB was a toddler;
He became quieter and happier when he spotted the wheels on my mobile chair, and spent 10 minutes pushing the chair backwards and forwards with his eyes fixed on the wheels. (Speech and Language therapist, August, 1996)
Classic, stereotypical autistic behaviour flagged up, but the word autism doesn’t appear till the following year in a letter from the GP to the paediatrician;
LB went on a school trip to Hazard Alley today. A purpose built safety centre in Milton Keynes for ‘experiencing hazardous scenarios in safety’.
In his diary, his teacher had written “LB was on fire, answering all the questions.” Attaboy! Being known as ‘Health and Safety Sarasiobhan’ around here, this was a trip after my own heart. Risk reduction knowledge.
“How was Hazard Alley, LB?”
“Good Mum. It was good Mum.”
“What did you do there?”
“Looked at hazards, Mum.”
“Cool.. What sort of hazards?”
“Like roads, Mum. Roads are dangerous.”
“Ok. And what else?”
“Lorries, Mum. Lorries are dangerous.”
“Why?”
“Because they run you over, Mum.”
“And anything else?”
“Petrol stations, Mum. Petrol stations are dangerous.”
“That’s right. What about in the house? What hazards are there in the home?”
“Dunno, Mum.”
“Try and remember.. What is dangerous in the home?”
“Cookers, Mum. And fires. House fires, Mum. And everything, Mum. The home is full of hazards*, Mum.”
“That’s right. Hey, Vicki said you answered questions. What questions did you answer?”
“It’s very dangerous, Mum.”
“Oh. What was the question?”
“How dangerous is it, Mum?”
“….. What did you learn then, about avoiding danger?”
“Don’t go down dark alleys, Mum.”
*Yep, you’re right matey… spot on.
Many of you will be, luckily, unaware of Atos, a French IT company. Googling Atos will produce mountains of complaints and criticisms about Atos Healthcare, a divison of Atos, that has been awarded the contract to assess scroungers’* ability to work on behalf of the Dept of Work and Pensions (DWP). To save you the task, here is a good overview of the Atos crapness. Well this company is raking in the casheroony in a big way. Bit like A4e (Action for Employment) and the infamous Emma Harrison, until recently, Cameron’s families *cough* *cough* *cough* tzar.
So, back to Atos. And LB. Well, as I’ve mentioned here before, I recently found out, through mates (rather than the enormous machinery of health, education and social care services) that LB has been entitled to Employment and Support Allowance since he turned 16 over a year ago. We can backdate claims by three months.
To start the claim, I did a phone interview with JobCentre Plus (JCP) which lasted about 40 minutes and included mind boggling questions like “Who is the head of your household?” The next step was to get a sick note (???) from the GP. He sensibly gave LB an indefinite sick note. This was returned by JCP as it needed to be backdated by three months. Back to the GP for second sick note. Indefinitely sick since November 2011.
So a medical practitioner has authorised LB’s removal from job seeking indefinitely. But that’s no longer enough. There is a Limited capability to work questionnaire to fill in, so that experts (undefined) from Atos can judge whether or not LB has legitimate access to allowances in place of paid employment.
Well. Where to start? It’s 20 pages long, covering questions about medical condition, treatment/medication, physical and ‘mental, cognitive and intellectual functions’.
Questionnaires are always flawed but this one is legendary in its crapness. I feel strongly that if someone can’t fill in the questionnaire themselves, because they have severe learning disabilities, then it’s a done deal. Bin the questionnaire, it’s pretty obvious that this person is going to have a limited capability for work. I’m not suggesting at all that people with severe learning disabilities are not ever capable of paid employment, but that some limiting parameters are in place in terms of the engagement with the process. And if they can’t engage with the process, some other poor buggar (often parent) will have to instead to fill it in on their behalf.
Compounding this, the content of the questionnaire is baffling and ultimately meaningless. For example;
Can you learn how to do a simple task like setting an alarm clock or a more complicated task like using a washing machine?
How is setting an alarm clock a simple task? You’ve got to be able to tell the time for starters, before you even turn to the clock. Just a small consideration I suppose in the experts at Atos’ eyes. Teaching LB the time has been an ongoing process for the last 2/3 years and no, the boy ain’t cracked it yet. Let’s park that (minor) detail for now. Do Atos mean a manual alarm clock, where you have to scooby round some second set of hands to the time you want the alarm to go off? Never an easy task. Or a digital alarm clock??? It is ill-thought out nonsense.
The next question is “Initiating actions” and asks; Can you manage to plan, start and finish daily tasks? Possible answers – never, sometimes or it varies. Again, gaping holes here. Do they mean unaided, or with prompts/support? Do they mean ‘sensible’ plans/tasks, like ‘today I’m going to buy some bread and milk’, or less ‘sensible’ plans, like ‘today I’m going to stay in bed and play with my willy all day’? Atos would possibly argue that the text box below each question enables the more nuanced details to be thrashed out, but how is that text going to be measured, counted or made sense of?
Well here is how; an outline of the way in which the questions are awarded points. So, for example, points for the simple task question;
Cannot learn or understand how to successfully complete a simple task, such as setting an alarm clock, at all. (15 points)
Needs to witness a demonstration, given more than once on the same occasion, of how to carry out a simple task before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a further demonstration of how to complete it. (15 points)
Needs to witness a demonstration of how to carry out a simple task, before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a verbal prompt from another person. (9 points)
Points mean prizes. Luckily, the details of the point scoring are available on various sites/blogs if you have access to the internet. A lot of people don’t. One of the strong criticisms raised in recent debates around the ‘abuse’ of Disability Living Allowance was that people sought advice, or even paid people, to help them fill in the forms. What the government fail to see, or choose to ignore, is that these forms are so overly complicated, and with hidden agendas, that most people would not qualify for the allowance without the help of people who understand the system and process. Not because they are scamming the system.
By page 15, I gave up with the game. I started to write ‘LB has severe learning disabilities’ in each box. I don’t know how many points that will produce, but I’m willing to take it up with Atos or JCP. It’s a nasty, underhand, thoughtless and ultimately meaningless process designed purely for economic reasons; to reduce costs. The human costs are racking up of course. But hey ho.
*In case you didn’t know, benefit claimants are all scroungers until proved otherwise.
Update: 20 July.
Got DWP letter today. LB’s met the eligibility criteria for Support Group. “Success”.
“Mum?”
“Yes?”
“Mum, do you like heavy haulage, Mum?”
“Yep.”
“Mum, is heavy haulage roadworthy, Mum?”
“Yep.”
“Have they checked the oil, Mum?”
“Yep.”
“Have they checked the tyre pressure, Mum?”
“Yep.”
“Have they checked the bunks are bolted in, Mum?”
“Yep.”
“Have they checked the engine, Mum?”
“Yep.”
“Mum?”
“Yes?”
“Mum, do you like heavy haulage, Mum?”
“Yep.”
“Mum, is heavy haulage roadworthy, Mum?”
“Yep.”
“Have they checked the oil, Mum?”
“Yep.”
“Have they checked the tyre pressure, Mum?”
“Yep.”
“Have they….
……
mydaftlife 