Clients. And the learning disability fug

Some people may think I’m disproportionately enraged by what I’m about to recount. They may raise their eyes to the ceiling and think ‘What a bligey old fuss about nothing. Get over yourself lady’.* Well sorry, but I think they are wrong. It is important. And the mundane context makes it all the more important because of what it reveals.

So. I went to collect LB from his after school club this evening. This is now run by the Guidepost Trust, a registered charity that supports a range of people. On their website they state;

In all our projects and services we start from the view point that every person is special and deserving of dignity and choice and this ethos runs through the Trust.

Now, I don’t have a particular beef with the Guidepost Trust at all. I don’t think (or I don’t know if) they are any better or any worse than any of the numerous charities that provide similar services. They all spout the same sort of stuff, about person centred planning, choice, autonomy, and so on. They all have the same sort of websites, leaflets and so on. It all becomes a bit interchangeable really.

But anyway, back to today. I rang through on the internal phone for someone to bring LB out. (Yep, you don’t get to go into the after school club to collect them, they are escorted out, but that’s another story). While I waited in the foyer, I looked at the new display that had gone up on the noticeboard, with various bits of information. The after school club laminated timetable stated;

3pm: Clients are brought across from the primary school.

Clients? Clients??? From the primary school??? I can’t convey how wrong, and crushingly depressing it was standing there, waiting for LB to appear, looking at that sentence.

Why am I so upset, angry, depressed, furious and outraged by such a tiny sentence? Because it demonstrates the shallow, meaningless, ultimately pointless attitude social care services (and broader) have towards learning disabled children and adults. It highlights the way in which disabled children are effectively institutionalised from such an early age. There have, on paper, been huge shifts in policy and provision since the 1970’s and the move from residential to ‘community care’. The introduction of the concept of person centred care, direct payments, Valuing People, etc, etc, etc, etc, etc. But for the bulk of learning disabled people, life remains pretty much as constrained, managed, exploited, abused, and perceived as worthless, as it was before the likes of the late Jim Mansell, and others, started to instigate change.

Ten years ago, David Race, in the introduction to his book – Learning Disability: A Social Approach – wrote;

I am struck by how many of the themes covered by the thesis cited at the beginning of this chapter [his PhD thesis on the historical development of service provision from the 1970’s] still remain. Congregation, segregation and devaluation even in the midst of community life all remain. Public fear of the ‘otherness’ of learning disability, stoked up further by a public media that seems unable to take a broad view on any issue, has left people in probably as vulnerable a position as thirty years ago when the scene was dominated by institutions.

Well, that still stands as far as I can see. And with the introduction of the Welfare Reform Bill, things can only get worse. Underlined by structures and processes that are steeped in meaningless rhetoric with no authentic engagement with the lives of learning disabled people or children. That no one involved in producing the after school club timetable could actually see outside of the learning disability fug of prejudice, lack of awareness and a carelessness (possibly created by attendance on relentless ‘professional’ courses) to suggest that perhaps ‘clients’ should be replaced with children or kids speaks volumes to me.

*I’ve left swears out of this post, even though they are pinging around my head, because my old ma keeps telling me to send these posts on to our MP (and he would be a bit put off by the colourful language). 

Gervais, Derek and the dog ate my homework

It’s Easter Monday, and I was going to do some work but for two things that happened. One, LB lost the bus ticket from his earlier trip to the bus museum with his carer. Two, Ricky Gervais has defended his new show, Derek in an interview. The combination of a long and fruitless (torchlit) search for the missing ticket, and the distaste and discomfort created by Gervais’s careless defence of his show, have left me out of working sorts.

Instead, I’m going to write about Gervais and Derek. The show is based on the character, Derek Noakes, “a simple man working in an old people’s home”. There are only short trailers available*, so maybe I will be retracting this in a few days time, when it is aired in full. I sincerely hope so.

Of course, I’m writing from a particular position and, quite possibly, fifteen years or so, before I became intimately acquainted the world of dudes like LB, I may have found the show funny. I’ve re-watched various TV shows and films that I originally found hilarious and winced painfully. Just as I wince when I hear friends, colleagues or others making careless or derogatory statements about difference. I think it’s fair to say, mainstream life generally remains a long way off understanding disability, but in particular, learning disability.

The full interview with Gervais can be read on Nicky Clark’s blog, together with a link to the trailer. I thought I’d just have a little looky at one extract here.

Nicky Clark asks “Why does the belief Derek is learning disabled persist?”

Derek is a fictional character and is defined by his creator. Me. If I say I don’t mean him to be disabled then that’s it. A fictional doctor can’t come along and prove me wrong.
He’s different. But then so are a lot of people. He’s not the smartest tool in the box but he’s cleverer than Father Dougal, and not as different as Mr. Bean. He’s based on those people you meet who are on the margins of society. Nerds, loners, under achievers. If he had any specific and defined disability I would either get an actor with that disability to play the role or I would make sure I was an expert in that disability and the best person for the job.

So Gervais is the creator of Derek, and if he decides Derek ain’t disabled then he ain’t. And no fictional doctor is going to prove him wrong. Mmm. This is a funny old argument, that is easily dismantled, but it is important for Gervais to sustain, because it supports his premise that he ain’t “pretending” to play a learning disabled character.

Differentiating between disabled (diagnosed), non-disabled (undiagnosed), or “simple” as the BBC flags the character, is kind of meaningless. Gervais may be hiding behind a group of older people who have not been ‘officially’ diagnosed with learning disabilities, because these labels weren’t around when they were kids. Hence the BBC labelling of a “simple”man.  But this is sleight of hand and an unsustainable distinction. Gervais plays the character as if David Brent is pretending to be learning disabled, with shifting levels of articulation and a lot of gurning. I suspect this portrayal will spread speedily through secondary schools, and wider, inspiring a new generation of ‘Derek’ type impressions aimed at learning disabled people.  Gervais, the “intellectual comedian” as he defines himself, has gone for an obvious, stereotypical representation along the lines of the “mong face” images he recently tweeted. That he is ignorantly (at best), but more likely deceitfully, trying to argue otherwise, is pretty crap.

Going on to say “If [Derek] had any specific and defined disability, I would either get an actor with that disability to play the role or make sure I was an expert in that disability and the best person for that job” is meaningless guff. Learning disabilities are unspecific and often undefined, other than by the broad term; learning disability. Becoming an expert in a particular ‘disability’? Well you crack on matey, but it may take a while and probably requires a dose of personal experience.

I’m a big advocate of difference rather than deficit, and strongly argue for an inclusive society in which diversity is celebrated. I don’t think Gervais really is. He is just offering a lame defence for a show that is all about him. Ricky Gervais. “The creator”. The BBC ran the story of his defence of Derek today, and he has been tweeting the link to his followers, urging them to read and retweet the link to the interview. If he was hoping to present himself as some sensitive, aware, creatively original and intellectual writer, he’s failed badly for me. It’s on the level of the dog ate my homework.

* Turns out that all previous incarnations of Derek Noakes have been removed from the internet. I can imagine it is a task and a half to cover the far reaches of the web and erase past traces of video snippets.

Meeting Danny in the supermarket

I bumped into Danny in the supermarket, this evening.

“SARASIOBHAN!!!! WHAT.ARE.YOU.DOING.IN.HERE???” he shouted loudly,  laughing, phone pressed against his ear.
“Hi Danny!! How you doing???”
“OOOOH!!! Joan is on the phone. She wants to speak to you.”
“Sarasiobhan! WHAT ARE YOU DOING??? What are you doing in DANNY’S FLAT?????”
“Hi Joan! No, I’m not in Danny’s flat. We’re in the supermarket…”
“WHAT???”
“WE’RE IN THE SUPERMARKET. I’M.NOT.IN.DANNY’S.FLAT,” I shouted.
“Ahhhhhh!!!!”

We laughed. Had a chat. Then Danny disappeared.

I’ve done a bit of research about going out in public places. Probably not surprising to you loyal blog followers, given LBs open engagement with all things ‘out of order’ in his book. In one interview early on, a mother of a young learning disabled boy told me she always shopped in Tesco’s with him early on Saturday mornings. I remember thinking to myself “Sensible woman..”

I asked her at the end of the interview to explain why she did the early morning gig. Without hesitation, she explained that her son liked to touch people and say “Hiya”. If the supermarket was busy, people never responded. If it was empty, there was more of a chance someone would say “Hiya” back.

It was a lesson to me in assumptions. One I still use in teaching.

She went on to say that she liked the way in which being out in places like the supermarket, or on the bus, with her son, had reduced her inhibitions.  She enjoyed his random behaviour and interactions with other people. It made everyday life more fun and lively. “Oh blimey,” I remember thinking, “You totally lost me there…”

It took a few years, but I’m with her on that now.

Public space can be a dull, colourless, overly ordered, space.

It was good to see you, Danny. And to talk to you on the phone, Joan!

LB, the unlikely ethnographer

I’ve mentioned Garfinkel before on this blog, in relation to old Chicken Bone Man and the extreme porn.  (And for the geeky among you, here is a lovely conference paper about Garfinkel, space and the achievement of the ordinary.)  I used to think having a dude like LB was like having a permanent little rule breacher.  Now I’m beginning to think a bit differently.

I’m starting to think of learning disabled/autistic peeps more as unlikely ethnographers than rule breachers. Unlikely ethnographers of normality.

Here’s an example.

LB said he’d wait in the car when I needed to get some milk the other day. I rushed into the shop, bought the milk and walked  back across the car park towards the car. I could see LB in the back of the car looking my way. I waved to him. Nothing. I did an even bigger wave. Nothing.  I waved like I was in the audience greeting the return of Nelson Mandela from Robben Island. Not a movement. He just watched me.

“LB, next time I wave at you, can you wave back at me?” I asked, exasperated, when I opened the car door.
“Why Mum?” he asked.

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?

Continue reading

The panic button

I bumped into an old mate, Nicola, in town today on the way to work. She, too, is in that horrible, horrible space between children’s services and sweet fuck all.  After a quick catch up (that was pretty negative because of the sweet f.a. situ), she asked if I’d heard of seizure alert dogs. Her son, 17, has developed epilepsy, she doesn’t want to put him on medication and her son’s consultant ain’t very happy about this.

“Well, funny you ask because….” I started.

“Ha ha ha ha!!!!!! You always know something funny about things, Sarasiobhan!”, she laughed.

“…I read about this woman,” I continued, “she had a seizure alert dog who was brilliant. He sensed when she was about to have a seizure and nudged her, so she could take medication. She had a panic button installed in her flat that he could press with his paw to call the paramedics if she became unconscious…”

“Wow, that is amazing.  I will definitely look into it for Billy”, said Nicola, paying proper attention at last.

“The funny thing was, if he felt she wasn’t paying enough attention to him, or felt like a bit of attention from the paramedics, he would walk over to the button and stand, with his paw raised, ready to press….”

“Hahahahahahahahahahahahahahaha”, Nicola howled, hysterically hanging on to my arm. Her laughter was infectious and we stood, a couple of hysterical women, in a sea of commuters and Summer school students. Bit of a chuckle and tonic.

More details of the story of the young woman with the seizure alert dog, and other young people’s experiences of epilepsy, can be read here.