The outing

Today was a funny day. I went to Bristol to meet two women I’d ‘met’ through Twitter, Alexa and Kate, to visit a social enterprise scheme called Props.  It was hilarious meeting people through Twitter. Eh, who? What? Where?

I chuckled as I walked through the ticket barrier at Bristol Temple Meads, wondering whether I’d actually meet them. Especially as I had in mind we were meeting at Bristol Parkway which is so much smaller.  But there they were. Freezing and big smiles. Kind of recognisable through avatars and the odd tweeted photo.

By the time we were sort of (but not really) lost looking for the Props base somewhere in Bristol, I felt I’d known them both for years. We laughed. And connected tweet snippets from past months with shortcuts forged by the experience of having less than straightforward kids. Loveliness.

But the outing was about Props. And Dave and his crew delivered. Big time. Basically it’s a space for disabled young people to learn, work and flourish. As part of the community with a strong commercial focus. We hung out with Matthew and Jethro. Matthew was hugely impressive. He worked his socks off in an understated way. Making drinks, tidying up, keeping an eye on Jethro’s work, and demonstrating a sophisticated engagement with the tasks involved in print room work. Jethro added the comedic dimension to the visit, with hilarious one-liners and an easy engagement with everyone that I would love a dose of. They both shone.

And made us some great t-shirts.




Wowsers, I hear you say. Social services must be chucking money at this organisation.

Of course they ain’t.


It’s a tough gig bringing up a disabled child. Yep. It shouldn’t be, I know. Appropriate, timely and sufficient support would make a huge difference. And a seismic shift in public attitudes. Of course these things overlap and I ain’t optimistic for all sorts of reasons that they will ever happen. But if they did, there would still be trickiness.

Take this morning. We’re in the midst of pretty dodgy times with LB and he’s booked into Parasol for four days for half term activities. A charity organising and supporting young disabled people’s access to, er, fun. Yep, it’s as simple as that.



Like his two younger brothers who will probably sleep/doze till lunchtime. Sigh.

All sorts of thoughts and considerations….

You’re kind of right…
We don’t want another major kick off….
You can’t watch youtube all day….
We’re both working today….

“You’ve got to go.” I said. Some ranting and raging. But at a low level. And he’s off to the Kassam Stadium for a day of bowling and cinema.

Now Parasol is an enigma to me. They organise a range of activities in and around Oxford. You drop your child off at stated destinations; outside the Playhouse in the town centre, or in the ice rink car park. Or at a local community hall. Believe me. This is seriously weird to a parent subjected to years of constrained, heavily policed and overly organised out of school child care for the ‘special needs child’.

Eh? Leaving LB at a community centre with the doors wide open, kids in the car park, and helpers running around having a laugh in squirrel onesies? Hello? These kids are runners, you know?! They’ve got no sense of stranger danger or road safety???? Hey, the door is open!!! Anything could happen. Anything! You hear me???

The organisation of Parasol appears chaotic and random.

But it isn’t. It’s run by and staffed by exceptional people who enjoy the kids, understand difference and get out there and get on with it. With impeccable leadership. And, in doing so, they allow some freedom, independence and fun for this group of young people.

Anyone who takes LB, and ten or more other young dudes, to watch Les Miserables (at an ‘ordinary’ showing) is cracking on in the right direction in my book. We all just need need to catch up with them.

Celebrating segregation?

I ain’t surprised that only 35/1000 ex-Remploy workers have found new jobs, despite the 18 months of ‘individualised support’ offered to them by Maz Miller. I can’t imagine the impact on those 965 unemployed people (and, as importantly, their families). Of losing that structure, social dimension, coherence, and wage. I dread to think how it will affect their sense of self worth, isolation and health. Especially with alternative employment looking an impossibility. Anyone who talks about ‘benefit scroungers’ is talking crap. Apart from a small minority, work is a central focus of human/social life. End of.

I don’t support (or celebrate) the idea of segregated employment at all. I support the right for people to work, regardless of their ability, and this work should be mainstream (whatever that means).  But I know that’s an idealistic and, in the current UK economic environment, totally unrealistic position.

Closing the Remploy factories was a financially driven decision. While throwaway and meaningless statements about decreasing segregation were made, it was about saving money. We are no nearer to an ‘inclusive society’ than landing on the moon, finding out what ’causes’ autism, or whether there is life on Mars. Shedloads of money are thrown at the latter two but very little is invested in workable solutions to increase and support learning disabled people in mainstream work.

Until people (learning disabled people, carers/family members, general public, policy makers, practitioners, government ministers) start to talk openly and realistically about the issues involved, nothing will change. It reminds me of my early research looking at the experiences of mothers, learning disabled children and going out in public places. I found there were limits to the tolerance you could expect from other people. The bar is commonly set way too high (for prissy reasons) but, even when lowered, some things ain’t gonna be acceptable. Until we engage with these (sometimes awkward, uncomfortable?) issues, and have some open, creative and realistic thinking about what can work and how, why force (longterm) unemployment on hundreds of Remploy workers?

Another day, another cone…

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.


Has to be done today. In honour of my old Rosie turning up at 10pm last night as a Mother’s Day surprise. (Sob) After the shrieks and hugging, and after Tom had led Rosie up to her room to explain exactly how much of it he’d taken over for his stop motion films, we squashed back onto the settee (with the two dogs).

And it was lovely. So lovely to hear the kids chattering on together. Like the old days.

There is a lot of randomness growing up in a house with a learning disabled sibling. For years, there was a lot of terrible tantrums that could go on for hours and hours. These were so distressing for everyone, but from early on, the others seem to have learned not to moan, not to complain and not to say ‘What about me?’ There are too many ruined activities to remember really. Holidays cut short, days out that were a combination of military organisation and plain endurance.

Being on show in public is not something that many people like. But the kids have been in the centre of countless public situations where LB has berated people for (alleged) shoplifting, being ‘foreign’ or having some visible difference. Or just had a meltdown.

We went to White Scar show cave once. Britain’s longest show cave, one mile underground.  We put on our helmets (LB loves anything to do with emergency services) and set off in a party of about 20.  Our guide, a white haired cave enthusiast, led us along the narrow passages until we reached the highlight of tour; Battlefield Cavern. It was spectacular. The guide asked Rich to turn the light off as he was standing by the switch.  There was a collective “Aaaahhhhh…” as we stood on a wooden platform marvelling the glowing stalagmites and stalactites.  But switching off the lights was not a good idea.

LB started to quietly pray. Eh????

“Dear God, please get me out of this cave safely…”

We all looked at each other. A few people turned round to look at him.

Shh..LB. Shhhh now. Don’t be silly…”
Shhhhhhh LB…” hissed the kids, nudging him.
“God. Johnny English. Dear Johnny English save me, Johnny English…”
“…save me from the cave. Johnny English. HELP US. THE ROOF IS GOING TO FALL IN. WE.ARE.ALL.GOING.TO.DIE!!!”

Oh crap. Crap. Crap. Crap. Things disintegrated pretty quickly at that point. Britain’s longest show cave and all that. A mile underground. “Turn the light back on!“, shouted the guide, as Rich scrabbled round trying to find the switch. Children started crying, parents got agitated, LB kept praying. Loudly.

It’s probably fair to say we got out of the cave in record speed. A cross between a fast walk and a jog. Parties coming the other way were forced against the wall, as the guide, followed very closely by LB (still calling for Johnny English), went into emergency exit overdrive.

Eventually we saw daylight. LB stopped praying and cheered up.

“Funny little lad,” said the guide, panting, “is he alright?”

Despite these experiences, they all get on brilliantly. There is an easiness to their interactions, in which LB has a central role. Even though he doesn’t always respond. They all demonstrate an acceptance and understanding that isn’t articulated or remarked upon. It just is.

And I love it.


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

Laughing boy; agency, space and presents

I got to thinking tonight about LB’s agency.  I suppose this is because the work I’m doing at the moment is looking at the inclusion of people with learning difficulties in research. As usual, the research doesn’t bear an awful lot of resemblance to the experiences of people I know (including LB).

Continue reading

A crazy-dude free world

Vince and Howard from the Mighty Boosh

Ok, here’s the rub. You’ve bought tickets to see a show in London (a costa-del-armandleg jobby).  Three rows in front, a young geezer does impressions of the gorilla, Bolo, from the Mighty Boosh in a very loud voice every few minutes*.  The person next to him makes a show of saying “Shhhhhhhhh”, but this is more to appease the increasingly irritated people around them, than any expectation that he’ll watch the show quietly.

So, should they leave so that everyone else rest can watch the show in peace?

Or should the audience relax their expectations? Continue reading