Tag Archives: learning disability

Another day, another cone…

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Went to a meeting yesterday where I ended up wearing a cone of shame once it became apparent how I’ve largely ignored sexuality in my research. Evidence highlights differential health and social care outcomes for lesbian, gay, bisexual, transsexual, transgender, intersex peeps (LGBT) and yet, despite making a claim for ‘diversity’ in my sampling, I haven’t actively recruited LGBT participants.

My cone of shame was a bit bigger than usual as I’ve been looking at ways of making research more inclusive recently.  I’ve written and ranted about how we exclude certain ‘groups’ of people from studies, only actively seeking their involvement if the research is focusing on their ‘group’. We ascribe people in these groups a kind of meta-status that obscures other dimensions to their identity. Learning disabled peeps are an obvious example here. The learning disabled identity is so all encompassing that researchers (or others) would rarely think to recruit learning disabled people to a broader study about relationships or cancer or living in a rural area. (And if they do think about it, that thought can be dealt with neatly and speedily by a throwaway statement in the methods justifying their exclusion on ‘ethical’ grounds.)

So, the research community is sustaining and reinforcing exclusion through research practice. ‘Specialist’ research focusing on learning disabled people (or sex workers or asylum seekers or traveller communities or homeless people – the list is pretty extensive) can be ignored by the mainstream world cos it ain’t relevant. Instead, what is considered mainstream should be challenged through more inclusive research practice.The concept of ‘ableism’ offers some tasty insights here, as Fiona Kumari Campbell asks how the fiction of “the able bodied person” has been sustained over time when there is such variation among people? (see a chirpy and stimulating interview with FKC about this here).

Of course you can ask the same question of the dominance of heterosexuality. Discussing the current cone with a couple of people the challenges raised were about disclosure and relevance. ‘People may feel uncomfortable disclosing their sexuality to a researcher…‘ Well we ask ’em to state other ‘personal’ details so not sure why sexuality is any different. They don’t have to tick any boxes if they don’t want to. It ain’t going to be a deal breaker. ‘Sexuality may be less relevant in some health conditions than others…‘ Er, that is missing the point.  And so on.

But then I got to thinking that maybe cones of shame aren’t cones of shame at all. They’re cones of reflexivity which will inevitably involve uncomfortable feelings at times. It’s all part of the gig.

Doreen and Sam

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I met up with Doreen this morning on the bus to work this morning. Doreen worked for social services for 20 years as an escort and took LB to school for about 2 years five or six years ago. We loved Doreen.  She was sitting with Sam who was on his way to work in the café at Oxford Brookes. It turns out Sam used to go to LB’s school so we did a lot of catching up with different kids from the past.

D: Oh yes, we used to pick up Ben T at Radley Way and then go on to Rose Hill for Sarah H, she was a funny one and then back to Barton for Tom L. Then there was James C…
S: James C? Awww… you’re kidding me! I know James C from Anjali Dance Group.
D: Yeah, James C and then Donna T, do you remember? She was at Saxon House for a while.
S: Donna T? Yes. Oh you’re kidding me!  [hehehe]
D: And then there was Terry W…
S: Terry W? You’re kidding me!  Oh you’re kidding me right! I know Terry W from Mencap.
D: Terry W yes. I saw him recently in town. He came over and gave me a great big bear hug, as he does. But the person he was with told him off for talking to strangers. He said to her ‘That ain’t no stranger. That’s Doreen’.  I don’t know.  I see ‘em now and they’re all so grown up, but I still got photos of a lot of a lot of ‘em.  Anyway, I’m getting off here. Nice to see you both.
[…]
S: Do you know Joan M?
Me: Yep, I know Joan M. Do you know Danny F?
S: Danny F? You’re kidding me! I know Danny from Mencap.  Mencap.  Terry W. was in town. Why did the carer do that? They were wrong. Terry knew the lady sitting here. He knew her and they were wrong to say ‘don’t talk to strangers’. She wasn’t a stranger. Fucking outrageous. They were wrong. Do you know Daisy?

It’s all about the sheep

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A first. Blogging twice in one day. More photos of the sunset at Hergest Ridge. Suspect as an antidote to the indescribable cruelty learning disabled people were subjected to at Winterbourne (and elsewhere). The sheep in colour this time. Because it’s all about sheep at the end of the day.

LB and the school bully

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“LOCK HIM UP. LOCK HIM UP AND THROW AWAY THE KEY!
HE’S AGGRESSIVE.
HE’S A DANGER TO SOCIETY.
HE’S A BULLY.
HE’S CLINICALLY INSANE.
AND.. AND… AND…HE WATCHES TOO.MUCH.TV.”
“LB, what happened at school today?”
“Nothing Mum. Nothing.”

 

 

The adult service

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Realised I’d double booked myself for this Friday and had to cancel a visit from LB’s new social worker. The adult social worker. I then realised that a) I didn’t know her name and b) I didn’t have any contact details for her. Other than ‘ASW, Friday morning’. “Hey, crap bollock”, I hear some of you shout, “Why didn’t you write down the details at the time?”

I dunno. But I’m not sure it’s my responsibility to fact find in this situation.

When I met ASW, with LB’s current social worker, a few weeks ago, it was a pretty underwhelming situation. Chittering on, as I filled the kettle, I lightheartedly mentioned that LB said he didn’t want to meet her.

“Well,” she said, bristling, “I am his future.”

We sat at the table for ten minutes, having a forgettable chat (well apart from the bit where she defended A4E’s performance in the local authority). And made an appointment for Friday. I’m not sure what the point of the last meeting was, or this one because nothing is made clear. But I obviously needed to reschedule.

I emailed LB’s existing social worker. Asking for ASW’s contact details (and whether  she remembered her saying she was his future). I got an email back, ignoring my second question but stating the following;

  • Adult care manager is ASW, you can email her on xxxx. She will be his care manager when he transfers to the adult service. Once his care package is up and running she will then close to her. However he will remain open to the learning disability team. If you require further support after the closure to ASW then you just contact the team and they will re refer you to a care manager that is more than likely be ASW.

Eh? Sorry, but what does any of this mean? Is this social care speak? Are there some missing words? What does ‘close to her’ mean? And ‘open to the learning disability team’? What does that mean??? And why all the jiggerypokery if the outcome ‘more than likely’ is  always going to be ASW? What does any of it mean???

And why are you emailing me this crapshite piece of opaque, insider, meaningless jargon when I’m terrified enough about what the future will be like for LB?

Beyond shunned, trust and what?

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LB’s now been back from his five day PGL adventure for three days. And all we know is that he was ‘shunned’ by the boy he shared a room with, he went abseiling and ate chips. He says he had a good time. He says his room mate scared him. He says he had to sleep with the light off, which also scares him. He says he doesn’t want to go again. But then he didn’t want to go in the first place.

Oh, and I also know there was a ‘staff change’ on the Saturday in the middle of the trip.

This was LB’s first ‘adult’ holiday. It was organised by a care provider company who seem to have a good reputation. As I wrote earlier, there was no choice involved. We haven’t been shown any evidence of the ‘quality’ of this company (or any other company for that matter). The local authority obviously use this company but that don’t mean diddly squat. The company has glossy brochures. A bouncy, cheerful worker does home visits and gets the forms signed. A cheerful woman picked him up and dropped him off. There is a cracking performance of bright, breezy and cheerful. But what do we really know? There’s that screaming question; Why should we trust you?

Maybe I’m being overly protective. Maybe LB went off, had a great time and loved every minute. I hope so, but that’s not the point. It just ain’t good enough. I know, historically, learning disabled people have had a crap deal, but the current context of Winterbourne, the crapheap that is the CQC, the increase in hate crime against disabled people, and so on, is hugely concerning. LB, like many other dudes like him, is vulnerable. He doesn’t have a malicious bone in his body, is loyal, loving and great company. But he doesn’t have any resources to defend himself.

I don’t like this discourse of ‘care providers’ when profit is often be the motivating factor in their operation. What ‘care’ are they providing? Are they ‘caring’ or is it more about containment? I have no personal issue with the particular company that was involved in this holiday. I have a broader issue with the way in which LB has already taken his first step into adult (almost) services and already the foundation of lack of information, choice and control is laid.

Oh, and a ‘staff change’ during a five day holiday with a group of young people like LB, in my book, is a complete fucking no no.

Winterbourne

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I’m keeping this short.  I find it so upsetting I get that lump in the back of the throat thing and then tears, comparable to the recent downpours we’ve been having, start chucking it down my cheeks. Coverage of the recent independent report into the abuse of learning disabled people living at Winterbourne View care home institution by Margaret  Flynn* can be found here. We now know that there was a raft of factors (big surprise) detailed in the report that contributed to the barbaric and inhumane treatment of people who are pretty much defenceless. I won’t rehash them here, but just  quote this;

Andrew Havers, medical director of NHS Bristol, North Somerset and South Gloucestershire Primary Care Trusts, said: “Many of the systems that could have prevented the shocking abuse of patients at Winterbourne View hospital failed.

Yep. The systems failed. As they always do. And nothing changes. There will be hundreds more Winterbourne’s. Happening now and in the future. Our children, your children, future children, will be beaten, humiliated, abused, exploited, overlooked, neglected, teased, tortured and toyed with. Through systemic failure. On so many levels.

I tweeted a comment this afternoon about the fuss that was caused by the cat being chucked in the wheelie bin that time. I didn’t mean to compare human with animal abuse at all. I just wish that cases like Winterbourne produced the same level of outrage among people because until they do, I can’t see much changing.

Anyway. That’s all really. Other than I’m really learning the meaning of a heavy heart.

*Contrast this with Louise Casey’s tripe if you can be bothered.

Remploy and “loss making”

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I’m in favour of inclusive work places. Of course I am. But in terms of inclusive work practices developing in the UK, I’d say we were at a similar stage really (ignoring the unsustainable fluff introduced every now and again) to 30 years ago. Nothing has really changed.  Yes, there has been a shift away from institutionalisation but there is plenty of evidence that despite living ‘in’ the community, learning disabled people remain outside of the community, isolated, often victims of hate crime and not in, or even close to, employment.

And employment, or work, is one of the central features of our lives.  Something this pig ignorant coalition government wilfully misunderstand, misinterpret and use as a political tool for their own purposes.

Today Remploy employees are striking against the proposed closure of 27 “loss making” factories putting 1421 people at risk redundancy.

Remploy provides employment opportunities for learning disabled people (and so much more).  Remploy employees go to work, work and earn money. Ok, it’s an exclusive setting, but, for the time being, the rest of the UK workplaces are exclusive too.  Exclusive to people without learning disabilities. Until these workspaces become inclusive, closing Remploy is going to leave most, if not all, of the current employees unemployed.

Many or most Remploy employees will no longer go to work. Structured everyday life, use of space outside of the  homes, journey to and from work and social experiences gained on a daily basis will be removed.  Many employees will be left with the option of day centres, staying at home or using direct payments to pay someone to take them out somewhere. We all like going out, but as a part of our lives, not as a sole feature.  There are also implications for family members who will have to readjust their own lives accordingly.

Many or most Remploy employees will no longer work. The benefits of working are documented in a ton of evidence gathered over decades. I won’t bother to list them here, but the health consequences of not being able to gain employment are also documented. The lack of structure and activity, and the emotional distress caused by the removal of  working lives, may have serious health implications.

Most or many Remploy employees will no longer ‘earn’ money. Yes, there will be some financial support but it ain’t the same thing. And no doubt there will be some shenannigens about placing Remploy employees in an inappropriate work category, leading to more punitive sanctions in line with current changes to the benefits system.

So what is going on here? Is the government closing these factories because they subscribe to the vision of an inclusive society in which learning disabled people are supported, welcomed and sustained in paid employment?

Bollocks. It’s all about money. The worth and value of learning disabled people is so low, that keeping (financially) unprofitable factories open, even if they offer some people employment and everything that comes with that, is not an option.  But “loss making” in this situation, cannot and should not be measured financially.

The DWP commissioned report into the viability of Remploy opens with the statement;

The views expressed in this report have been based on discussion with Central Management only.

Sums it up really.

Progress

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It’s funny when you have a learning disabled child. The whole experience is drenched in so much unnecessary crap, and focus on deficit, that it becomes difficult to disentangle the important bits from the baggage that is thrown at you. It also takes time to step outside of the rigid, inflexible, structure of ‘normal’ child development to accepting the dude you have.

In the early toddler/pre-school days, instead of celebrating the progress LB made, I had a feverish, obsessional focus on what hadn’t happened. I wonder now if there were some thoughtful professionals along the way who tried to point out progress, but were met with a frazzled, semi-hysterical woman who found the fact LB was no longer going quite so crazy ape-shite when I reversed the car less relevant “THAN THE FACT HE AIN’T SPEAKING A WORD YET DESPITE HIS GROMMET OPERATION!!!” All very stressful, distressing and ultimately unproductive.

As years go past, those markers of normal development become more and more meaningless and I chucked em out along the way. I suppose, with hindsight, I wish someone had let me know gently and effectively early on that his would be a different path, with different milestones. I suspect that some professionals thought they were. The paediatrician sort of tried but failed spectacularly with her statement, when he was about three, that we should expect nothing and come back to see her when he reached adolescence to talk about respite holidays. I couldn’t get out of bed for about two days after that appointment.

Anyway, I’m thinking about this today because LB’s progress has shone. First, he spontaneously said “Hello” to us this morning when he got up. Second, he opened the front door to Tom this afternoon and said “Hello, Tom. How was the cinema?” Tom looked as surprised as I felt. I filled Rosie and Owen in with these happenings this evening.

“You going all posh on us LB?” asked Rosie.

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.