16th Street Mall, Denver (2); Passing the time
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Monthly Archives: June 2012
16th Street Mall, Denver and the accidental man in the white hat
Bonsai trees in the Marriott lobby
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.
Travel tips 1: Getting to the USA
A brand new series of practical tips for the incompetent traveller, starting with the USA.
1. Do your research. Make sure you thoroughly read about where you are going and choose the hotel accordingly. Be aware that names like ‘Denver Tech-Center’ may not refer to the building in which your conference is being held, but an area of about 5km square. Remember that careless preparation can leave you staying in a hotel 15 km from the town centre with no means of transport and a lot of dual carriageways to negotiate.
2. Check everything at least ten times; date and time of flight, airport of departure and valid passport.
3. Apply for your ESTA visa waiver as soon as you can. Failure to do this may result in some very hairy, horror filled moments, especially if you are somewhere like a retreat the day before you fly with very patchy internet access.
Note: If the above scenario does happen to you, make sure you have a cool and calm mate handy, with internet access and savvy searching skills, to iron out all those creases, provide the relevant information and get you back on your way to the States.*
4.Still at home, make sure you empty your hand luggage bag/rucksack fully before packing it with the stuff you are taking on board.
Note: If you fail to do the above and realise, once you are through to the departure lounge, you have something like, for example, a big bottle of shampoo in your bag from your last weekend away, don’t panic as you could have bought it in Boots in the terminal.
5. If you have a connecting flight once in the USA, you will need to pack any bottles (from your hand luggage or bought in duty free) in your luggage for the hold. You will collect this luggage on the way through security.
Note: If you’ve forgotten about that (for example) silly shampoo bottle in your hand luggage, and have already handed your hold luggage back to some guy, you will need to dump the bottle in the nearest bin at this point.
6. At this point, recheck your hand luggage to make sure no other nasties got through accidently before you reach the US security check. For example, the matching conditioner to the shampoo in a different pocket of your rucksack. If you don’t, security will.
That’s it for Travel Tips 1. Just remember, a good traveller is a prepared traveller.
* Indebted to Ulla for this one.
Slavery
“I AM NOT DOING THE DISHWASHER AGAIN. EVER. EVER! IT’S A CRIME AGAINST HUMANITY..AND.. AND IT MAKES BOSSY KIDS’ LIVES MISERY..”
“Eh, what’s that LB?”
“Nothing Mum.”
“What are you shouting about?”
“Nothing Mum.”
“It didn’t sound like nothing.”
“Mum?”
“Yes?”
“Mum, what’s slavery Mum?”
“Where people are held against their will and forced to work for the people who hold them.”
“Is slavery a criminal offence Mum?”
“Yes. Why?”
“No reason Mum.”
Progress
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.
The holiday
“Hey, LB. (Social care agency) rang today…”
“Yes Mum.”
“They said they’ve got a great holiday you can go on in the Summer. Five days at an activity centre with a few young people.”
“No Mum. I don’t want to go Mum.”
“Ahh.. it will be fab. Loads of fun and activities. You love the holidays you go on with school…”
“Who is it with Mum?”
“(Social care agency).”
“No Mum. I don’t want to go Mum.”
“Why not?”
“It will just be misery Mum. It will just be a bucket of misery Mum.”
“Well, Sue from (social care agency) is coming round in a couple of weeks to tell us some more about it.”
“I don’t want to go Mum. It will be misery, Mum. I just like lorries Mum. Irish lorries Mum.”
“Well, let’s have a bit of a think about it when we meet up with Sue.”
“I don’t want to go Mum.”
My diary
Found my diary from when I was about 15. Blimey. It is hilariously awful. My teenage self was clearly on an autism spectrum related path before that path ‘existed’.
I googled ‘diary’;
1. A daily record, usually private, especially of the writer’s own experiences, observations, feelings, attitudes, etc.
2. A book for keeping such a record.
3. A book or pad containing pages marked and arranged in calendar order, in which to note appointments and the like.
Well. My diary is a big fat fail on most of these criteria. About the best I can claim is that I had a book. A book in which I kept a brief, daily record of what I did. Excluding any feelings, observations or attitudes.
A random example entry (verbatim);
Thursday 16th October
M took us in car. Double English – test on Act III. Break. Maths – Essex numeracy test till 12.00. French till lunch. After lunch, library. Miss Martin told us about Merch of Venice trip. R.E; discussion about whether ‘decent’ people should get divorced. Geography; essays back. Walked home. Cooked pizza. Butterscotch Instant Whip. Watched Change of Sex part two. Julia/George bust operation. Slept.
Each entry is pretty much the same but substitute different lessons, teachers and flavours of Instant Whip. And interject a lot of “bored” and “borings” into the lesson descriptions. I suppose there maybe a glimmer of interest for my Southend High school mates. Maybe. But probably not. I find it so random now, looking back, that I detailed ‘break’, ‘slept’, ‘walked home’. What was the purpose of it? It kind of pre-dates the Ronseal ad campaign. It does what it says on the tin. But the tin says ‘tedious life timetable age 15’.
All I can salvage from it is that I put quotation marks around ‘decent’ in the divorce discussion. Maybe there was a hint of a sociological imagination there.
A succession of sick notes
Dear Iain Duncan Smith,
I’m writing about ESA and my seventeen year old son, LB. I know the process and procedures around claiming ESA are framed by a ‘scrounger’ rhetoric. Underpinned by the constant questioning of the integrity of those who are unable to work. I also know this is a spurious position; under-claims are greater than over-claims or fraud. We have so far had to provide two sick notes over six months (well three really because we had to get one to cover the 3 month backdated period). I think then an ‘indefinite’ sick note will do. I have tried hard to understand why this is necessary. What is underpinning the blanket need for a succession of sick notes? Is it simply a tool of attrition? The ‘scroungers’ will be worn down by having to return to their GP three times? GPs, in turn, will surveil their patients more closely for signs of cheating or trickery? I don’t know.
I didn’t want to get a sick note for LB. I didn’t want to because he isn’t sick. I didn’t want to because we have a ton of official paperwork highlighting and poring over his ‘deficits’ in micro detail from a gaggle of professionals; geneticists, ed psychs, paediatricians, teachers, social workers, psychiatrists…the list is endless.
I didn’t want to because it made me feel sad.
I found it more upsetting when I found out, through the allowance stopping as soon as it started, that I needed to go back for a second note. And then, again, after the reinstated allowance stopped, a third note. Perhaps if you had made it clear that three notes would be needed at the start, it would have been easier. But then I suspect my GP would have written the three on the spot, negating the need to return to the surgery (and take up his time). You may have been trying to close that loophole by deliberately making the process opaque.
Oh. I should probably add that I went to the surgery. Not LB. His GP doesn’t need to see him to know that he has learning difficulties. I wasn’t going to put him through the experience of being given a ‘sick note’ by the GP. He wouldn’t really understand that and he can get anxious going to the doctors. So it’s all a charade really. With a touch of farce.
I’m writing really to ask if you could try to get over your fixation with (fictitious) ‘scroungers’ and, instead, gain some understanding of how the process is experienced by disabled people, or their carers. And maybe shift the money invested into such a clunky, laborious and inefficient system into supported employment programmes that actually work in practice. LB wants to work. He is hoping to become an assistant caretaker.
Yours sincerely,
Sarasiobhan
LB and The Artist
Watched The Artist on DVD last night. LB was not too impressed, as you can see below. I’ve illustrated this tale with the most artistic window display I saw for the event that dominated the UK this weekend. Big spotty pants captures it perfectly for me. That’s all I’m saying.
“Mum? Is he [George V] deaf Mum?”
“No. He ain’t deaf.”
“Why won’t he talk Mum?”
“It’s a silent movie LB. There isn’t any talking in it.”
“Why doesn’t he just talk?…. Why.doesn’t.he.just.talk?…”
“Are you enjoying it LB?”
“No Mum. I hate it.”
“Why?”
“It’s so boring Mum.”
“Boring? Why?”
“It’s just.. It’s just SILENT Mum.”
mydaftlife 