“Finding him something to do…”

It was LB’s community team meeting at lunchtime today. He’d refused the farm so talk turned to finding him something to do instead of school. My brain nearly melted.

How can we be in this position of “finding him something to do“? Not just him. Any young learning disabled person? How can we be talking in these terms? Where’s the aspiration? The opportunities?  Ironically of course, giving LB choice is an effective way of erasing aspiration from his life; he will choose to stay in bed, watch DVDs and eat loads of cake.

I walked back from the meeting, head reeling. I’d mentioned that we have given thought to LB’s longer term plans (of course), we have got a folder full of residential college brochures that the county council will never fund, we know that local college provision is crap, and that leaves, er, direct payments. Which is where we started.

How can provision be this crap?

Well the walk to the unit kind of (but not really) sheds some light on that question. A 25 minute walk through a local estate to the ring road where the site is. I thought, funnily enough along the way, how this location reflects the status of learning disabled people in society. How much learning disability provision is located on the margins, at the edges of towns and cities? Winterbourne View was on an industrial estate. Leominster day centre is literally next to the dump.

A very recent indication of this status is evident in the endless discussion and jokes in the media, and social media, about the ‘swivel eyed loon’ comment, with barely any reflection on the offensiveness of this comment. It’s almost as if people don’t see it…. because really, and maybe subconsciously, they don’t see learning disabled people as fully human. 

I got home and had an email from the Care Manager. I’d chased her up this morning about arranging a meeting to talk about LB’s future plans. She’d emailed me a couple of months ago to say that when someone is about to leave the unit, they have a Care Plan Approach (CPA) meeting to discuss what is going to happen.

Her email said it was being held on June 10th. In less than three weeks time.

Turned out the invitation had been emailed to various professionals last week with a note at the bottom saying:

Please let me know if anyone else should be invited to this meeting.

No words. Just tears of frustration and rage and despair.

Language, careless statements and exclusion

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.

Karaoke-gate

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