Tag Archives: difference

Choice, cake and a chat group

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ryan5-306A couple of weeks ago, a support group for unit patients was set up. LB received an invitation to attend this group which was to be held on the Friday afternoon in the living room. That evening when I visited, I asked the staff member how the group had gone. Bit of a disaster, it turned out; everyone chose not to attend.

The choice agenda in practice. Kind of hilarious.

The following week, the group ran again, this time with the addition of cake. LB turned up, ate cake and chatted. A lot apparently. Of both.

The group is now called the Cake and Chat group. Well, for LB anyway. I’m not a big jargon person (I hope), but I think this is probably a rocking example of person-centred thinking.

 

 

Choice, Bond and bus tickets

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Rang the Unit this morning to see if LB wanted to come to town with us and have some nosh out. He’d been to the farm on Friday and had been quite chilled over the weekend.

“Maybe. Maybe not,” was the answer. This means no. I rang back a bit later to see if he wanted us to get him anything.

“No, thank you,” he said to the staff member relaying the question.

“Can you ask him if he wants a t-shirt or a dvd, or anything?”

The answer was “DVD please.”

Rich, Tom and I went into town. Tom started chatting about when we’d gone to watch Skyfall with LB. I’d forgotten, but Tom remembered how LB had sat patiently in the dark waiting for the bright daylight fight scenes so he could read his bus ticket. Hilarious. Kind of.

There’s something here about choice and constraint. But also about difference and tensions around making sense of our lives and the social world we live in. I still think of LB as an unlikely ethnographer, but that doesn’t help us understand how he makes sense of his life. This remains a mystery really.

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The interview

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In celebration of LB’s first ever job interview, at very short notice. A volunteer post at Helen and Douglas House, two hours a week to start with. He handled the interview the way he largely handles life; quietly chattering to himself and occasionally breaking off, when gently encouraged [nagged], to answer. The volunteer co-ordinator who interviewed him  was exceptional. As were the receptionist and the estate manager who will be in charge of him. It was one of those very rare times, outside of family, school and some specialist support, that everyday rules are adjusted (or ditched) to enable a different engagement. One in which unusual behaviours aren’t ‘wrong’. Just different.

And LB? He rocked it.

Scrap metal

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This week, LB shifted his attention to scrap metal. A break from Irish lorries but with worse sound effects on youtube. He also came back from his dad’s with a toolkit containing a hammer and screwdriver.

Last night, there was a terrible crashing noise upstairs. He’d put his die cast models (some limited edition) in a pile and was hammering the screwdriver into them.

“Whoa! Stoppit LB! What are you doing?????”
“Making scrap metal Mum.”
“Well you gotta stoppit matey. Now!”
“Why Mum?”
“Because I said so! You’ll ruin them!”

“Blimey,” I said to Rich, sitting back downstairs, “Model enthusiasts would be weeping if they saw that…”

Then I started wondering why he should stop bashing them.

Bonsai trees in the Marriott lobby

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One thing led to another, this afternoon, in the Marriott Denver-Tech-Center hotel lobby.  A baking hot afternoon. A war between suburban hotel shuttle services. I was left waiting for about 45 minutes to get from the conference hotel (on the edge of a 12 lane motorway), to the hotel I was staying at (in the middle of nowhere). A hell hole industrial wasteland of nowhere. I ain’t joking.

I hung out in the lobby which was the size of a small football pitch. Chatting to the ‘bell/concierge’ person every now and again. She was working her socks off trying to negotiate ways out of the hotel for a constant stream of large and small groups of people who wanted to go somewhere.

I watched delegates from the Vision of the American West Bonsai Convention carefully wheel their trees away on luggage trollies, and vaguely regretted not spending more time at their exhibition. Various delegates from the disability conference I was attending, milled around, on foot, in chairs, on scooters, chatting, signing, discussing where to eat that evening. There was a lively, end of the day conference buzz. I met a delegate from Witney who had emailed me months ago. Funny old world and all that.

Three young men came through the revolving doors dressed in US naval uniform. They visibly responded, seeing a small group of conference delegates standing by the entrance. One of them stopped, momentarily and stared. He was given a brief hand squeeze on the shoulder by his colleague. There were the tiniest of half grins, a small cough, then faces were rearranged into studied disinterest.

All in the Marriott lobby. On a baking hot afternoon. That’s all.

The ‘good life’ and sibling interactions

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Regular followers of this blog (love you all) will know that LB’s future plans (and lack of opportunity, ‘capabilities’, ‘a good life’) are weighing heavily on me at the moment. This is causing me to examine everyday family life closely.

So. I had a meeting in London today then picked up LB from his after school club on the way back. Tom (12) was just home after playing football in the park with his mates. Later in the evening, Tom came downstairs to say goodnight. This is a new development. He no longer expects or wants us to go and say goodnight to him in bed. Half an hour later, LB was sent to bed. After a series of verbal (nudges) orders to “clean teeth, wash face, get pyjamas on” he was ready for bed (and released from our surveillance).

Then I could hear a series of exchanges. Tom was asking LB to turn off his light. This involved various prompts, all cheerful. After an encouraging, responsive exchange, the light was turned off. A further “goodnight” exchange followed. Sorted.

I started comparing Tom’s interactions with LB, with our exchanges with him. Tom, Rosie, William and Owen all talk to or with LB differently to us. As do their mates. They don’t have the baggage of the ‘special needs’ label or of growing up in world in which difference was largely hidden away, influencing their exchanges. They chat. They talk to him as a brother or a friend’s brother.  They negotiate, or adapt their chat, to accommodate LB, but it’s still chat.

I can’t help thinking that we need to learn from their chat, their interactions, their casual yet ready acceptance, if we want to allow or enable dudes like LB to lead ‘a good life’.  It’s just difficult when his whole life is framed within a ‘special needs’ space with alienating structures and processes dominating it.

Language, careless statements and exclusion

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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.

The big ‘got’ question

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Oh dear. I suspect this is where my whimsical, cheerful little blog may get a teensy bit controversial (again).  I’ll try and find a nice, fluffy photo for the end to soothe any tensions raised. So the question is; can you ask a disabled person “What have you got?” Someone I know was asked this question the other day.  “EEEEK” “Shit! That’s outrageous!” “WTF??????” Were the sort of responses from other people when they heard (with a bit of swear embellishment). The question asker was an adult.

I’ve been thinking about this and am a bit undecided.  Well I sort of do know what I think, but I know what I think flies in the face of a lot of thinking, conceptualising and theorising about disability.

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