All posts by Monnow Man

Down’s Syndrome: Things I wish I had known

A contributor to the UK Down’s Syndrome mailing list recently posted this list in respect of her daughter, Karen, who has Down’s Syndrome and is in her twenties.

In many ways it reflected our own thoughts about Little A. It’s well worth reading if you have just been told that your baby has, or is likely to have Down’s Syndrome. Numbers 6 and 11 are particularly pertinent, in my opinion.

1. I wish I had known that Karen would be able to travel around London alone on public transport.

2. I wish I had known that she could live in her own flat, not residential care.

3. I wish I had known that she could use various complicated bits of technology from a young age including CD players, tape recorders, washing machines, telephones, computers etc.

4. I wish I had known that she would have choices as an adult and was not destined for the sheltered workshop told to me when she was 5 days old.

5. I wish I had known that intelligence wasn’t just about academic skills but it was about comprehension, observation and problem solving, all of which Karen does brilliantly.

6. I wish I had known earlier that you need to take the pronouncements of professionals with a large pinch of salt. That mother’s instinct (or dad’s) proves to be right in the majority of cases.

7. I wish I had known not only that she would be able to vote but that she would be able to choose the candidate based on her own ideals and not her parent’s politics.

8. I wish I had known that she would be so creative – poetry, paintings and the like.

9. I wish I had known that she would develop a wonderful sense of humour.

10 I wish I had known how courageous and confident that she would be.

11. I wish I had realised much earlier that having a learning disability is not a tragedy even if the rest of the family all have university degrees.

12. I wish I had known that having a daughter with Down’s Syndrome would bring me in contact with friends from all over the world and enable me to visit such places as Nashville and Blackpool. Also, it enabled me to meet and become friends with some marvellous people here in London.

13. I wish I had known that we would be able to do all the family things we would have done had Karen not been born with Down’s Syndrome.

14. I wish I had known that Karen was going to meet more famous people and appear on TV and in the press more than her siblings!

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Honesty and Capitalism

Those of us who live in capitalist liberal democracies are used to the idea of businesses having “mission statements”. Indeed they are so common, one wonders if they are bought off the shelf, so evasively coy are some of them:

“To be the best supplier of X product in our chosen marketplace.”

“To be the premier supplier of Y product.” (Just what does premier mean in this context?)

And so on.

But why do you want to be the best supplier of whatever it is? I have seen only a few mission statements that actually tell the whole truth; that unashamedly explain the reason for a company’s existence. In most cases the truth is that the company exists to make money for someone.

Fine. Say so!

I would be impressed by a company that, instead hiding its motives behind PR twaddle, would state that bald truth: they exist to make money. Credit us with some intelligence!

While they are at it, why not go further by simply behaving towards us in ways that don’t annoy us? If doing that costs more money, tell us so. And use plain English.

For example:

Mission Statement

We exist to make our shareholders wealthier. We aren’t ashamed about this.

We will do this by selling x service/product at a profit.

We will do this ethically and honestly, treating our customers with respect, compensating our staff at least in line with the market-average and providing a pleasing working environment.

If we have to use call centres, we will make sure the experience of using them is brief, productive and not frustrating.

If we do something stupid we will acknowledge it quickly.

We will credit the customer with intelligence. If it turns out that the customer is lacking in that department will not make them feel embarrassed about it.

Our environmental policies will be real, measurable and not PR fig-leaves to cover lamentable inadequacies.

If we don’t achieve these goals, we deserve to get our arses whipped in the marketplace and go out of business.

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Fish

Crossing the Wye Bridge in Monmouth yesterday, I glanced at the shallows below the bridge and noticed a shoal of about fifty trout, though I’m sure a fish-nerd woud correct me as to the species.

Among the smaller fish, swaying gently in the pellucid* water was a large salmon. Seeing it invoked small-boyish excitement in me and I wanted to rush to tell someone.

*I remember this word from a poem I read at school and have been looking for a non-pretentious context in which to use it for nearly thirty years. This isn’t that context but I have used it anyway. So there.

The Day of the Strandings

What follows is for those who have asked me how my weekend was:

Friday proved very tricky for many of us in the UK who were trying to get from one bit of it to another. The bit I was trying to get from was the ancient English city of Gloucester and the bit I was trying to get to was the ancient (now) Welsh town of Monmouth, about twenty-seven miles away over the border, depending on the route you choose. As Friday dawned, snow had fallen and begun melting the day before and the weather forecasters were being particularly smug about how accurately they had forecast it.

By Friday lunchtime, however, word was getting through that unforecasted snow was beginning to fall heavily in south-west England, the the English Midlands and Wales, the three regions of the UK that I traverse on my route to and from work. I walked briskly to the shops in central Gloucester at about midday to pick up a copy of Fortean Times magazine and ate a bit of lunch. By the time I got back to work, I was getting concerned that I might have to go before the snow got too bad, but a part of me (my conscience?) was telling me that “we don’t really do snow here in the UK”, “it’s a temperate climate bla bla bla” and it’ll look like I’m just extending my weekend by leaving work very early. The cautious Taurean part of my psyche won the day though and I walked to the Park and Ride at about 1 o’clock, got in my car and headed out of Gloucester for the M50 motorway, which takes me through the town of Newent, famous for an Onion Festival and a Bird of Prey sanctuary.

About a mile from Newent the snow had begun falling very heavily and the traffic slowed to a sensible speed. As we reached Newent proper, though came almost to a standstill as we approached the main traffic lights of the town. Here a man was advising people trying to continue through the town that a juggernaut ahead had jackknifed and was blocking the route to the M50. The obvious choice was to turn around and take a route through the Forest of Dean, but I was persuaded not to because:

  • the cars turning around were sliding badly in the snow and weren’t able to go above walking pace, braking was very scary. Twenty something miles in those conditions wasn’t an appealing prospect.
  • the alternative route went through some areas with lots of hills that were badly affected by snow.

My suspicions were born out the next day by, among other things, the sight of cars abandoned on the road I would have taken.

So I made the decision that getting home without (a) sliding my car into another car or a tree or (b) getting stranded in snow overnight would be pretty unlikely and called K. to ask her to find a room in Newent for the night. I turned into the town and parked the car in the local car park, got out and trudged through the slush to the George Hotel, a seventeenth century coaching inn in the town centre. On the way I discovered a hole in my right boot and on checking into the pub/hotel was directed to a shop that sold mostly tweed and things for green-wellie wearing folk. The woman there was very kind offered my, yes, some green wellies, but in the end sold me a pair of (leather, oh yes) brogues for £20 plus a pair of khaki hiking socks. I went to the supermarket, where I bought a toothbrush and toothpaste and retired to my room. There I watched Countdown and The Weakest Link as the residents of Newent peered out of their windows at the cars skating and the lorries failing to get up the hill.

Bored by the TV for the retired, with muffled crunching footsteps I walked to the town’s lake on which the ducks were skidding around. On the way back I helped a car pull away from the kerb with a push. The driver headed straight for the other kerb, at first unable to control the steering, but quickly straightened his path. My conscience is still bothering me that I didn’t tell him that his chances of getting out of town were slim, as lorries were getting stuck on the main road up to the traffic lights where a tractor, guided by firemen was pulling juggernauts into three point turns.

I went back to the pub and sat at the bar, which was busy by this time, read the newspaper, chatted with landlord and drank two pints of Butty Bach ale and one of Mordred. I didn’t know what the latter was but heard other people ordering so though I’d try one to fit in.

During this time big A. was having her own traumatic journey back from Leeds. Her coach had stopped in Birmingham but the connecting one to Monmouth had been cancelled. K. cleverly asked a fellow member of the UK Down’s Syndrome Mailing List – who lives in Walsall – to pick her up from Walsall Station and give her a bed for the night.

When I went to bed, the rest of the pub’s rooms were taken, unusual for the middle of February: the landlord was reportedly very pleased. I woke up at six and wasn’t able to get back to sleep so read until breakfast. At breakfast a group of twenty-somethings led by a middle aged man with a posher accent than theirs was discussing a murder, coffins and a murder weapon. Shamelessly eavesdropping I worked out that they were a film crew and actors who were going to spend the day in the town filming the recreation of a Victorian era murder. One of the team suggested a shot of blood in the snow for a bit of melodrama, but the posh director chap vetoed the idea as it was the “wrong type of snow”.

After getting home uneventfully but gratefully I arranged with big A. to pick her up from Newport station just after lunch. As I set off, however, I managed to break the windscreen wipers on my mother’s car by turning them on while they were covered in thick snow. So I didn’t go to Newport. Big A. was saved by a friend who was driving to Cardiff to visit a mutual friend and picked up big A. from Newport.

Snow is nice if you dont have to travel through it.

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Male Bashing

This lady says some stuff that resonates with me. She’s grumpy, uses bad language and the idiom is American, but see past that and I think she makes some good points.

See Idiocy Is Gender Neutral

Incidentally, for those who have found some of my recent posts less jolly than they used to be, I’m actually in a jolly mood as I write. The link above just struck me as relevant to some of my thinking recently 🙂