24 Dec 2008

Christmas Preparations

Happy Christmas to anyone who reads this blog. I love writing it and knowing I've got a record of some of the family's exploits, as well as my rants about this and that. I've been at it for almost 3 years now and wonder when I'll have had enough.

Lady has got some of the neighbourhood kids in for a Christmas party right now. She's made popcorn and rice crispy buns, and is playing a selection of top tunes on YouTube as they dance about. Simple pleasures eh?

Gordon is off for a run with Pippi. He's been preparing for tomorrow's dinner while I wrap the children's gifts and sort out rooms, trying to prepare a bit of space for the new clutter due to join us tomorrow morning. He'll be cooking turkey with pork belly. The pork skin's got a nipple. I feel slightly freaked out by this evidence of it's mammalian beginnings.

Duncan has been playing Zoombinis and re-reading the little book we made together called "Christmas Days" depicting the expected events of tomorrow. Thankfully I managed to source a cuckoo clock, and it's rather fine, even if it's not quite authentic and requires batteries. At least it's got a white bird and the pendulum (so I've been assured) does move so it should tick all Duncan's boxes. I might cheat and make a little label saying it was made in the Black Forest. Ah, stooping to forgery to please my son!

I'll bring all the gifts down tonight last thing. We don't leave presents under the tree here, one little boy would find it too difficult to resist ripping them open to seek the clock and other items he so desires.

One more thing, I have to get in a bit of a boast about Lady and Thomas and how well they did at their gymnastics competition. Thomas won all the gold medals for his age group surprising me with how hard he concentrated and how much effort he put in. Lady didn't win any medals, the standard was so much higher for the 10 year old competitors, but Gordon and I both got to see her performance and she did really well. She's strong and has great poise and grace. She desperately wants to go to more lessons and improve, so she can do that after Christmas. It was a pleasure to watch them both. I never realised that either of them are really any good! I usually drop them off outside the hall as I always have Duncan with me in the car and I don't like to take him in there. Lady was sad at first, especially since Thomas had done so well, but she's OK now and feels a bit more hopeful about the next competition.

Thomas was just a picture of pride and joy as he stood in the middle of the podium 3 times. On the last time, he tuned to us, his face beaming and gave us 2 thumbs up. It was a nice thing to see.

22 Dec 2008

The Big Family Christmas Party

It happened yesterday. I'll get my complaining out of the way first.

We gathered in a hotel back home, and though my Dad had requested and been promised a function room for our horde of 13 adults, 9 children and 2 babies, someone in management decided the room wasn't big enough for us and set our tables up in the main function room instead. And though we'd expected to have a room for 3 hours or so, we had to clear out after only 90 minutes to make way for a kid's disco.

Then the whole meal/drinks delivery was utterly chaotic. Instead of having service at the table, we had to join the queues for their lunchtime carvery in the adjoining room. When you've got loads of hyped up kiddies, going back and forth to fetch food isn't as easy as just sitting there and having it brought to you. The food was bleuch too, apart from the soup. It seems all these sorts of places can make a decent vegetable soup, the old fashioned kind with bits of lentils and barley. Duncan ate 3 bowls of the stuff.

But we were all in good form and the crack was mighty. The children were dressed in their finest Christmas specials (some in shirts Hobbits would be proud of) and the grown ups had scrubbed up nicely too. The children loved having the big room with a dance floor to charge around, and enjoyed catching up on all their important news; playground coups and the forging of new alliances on their streets, who's teeth had fallen out, what's happening in the world of culture (limited to HSM3, Hannah Montana and Doctor Who) and most importantly, who was getting what for Christmas.

Duncan had expected a particular train and DVD for his gift. I knew which sibling was buying to him and told him the items he preferred, thinking either of them would suffice But when he got the DVD but not the train, Duncan was upset and ranted and whinged for a while about the shocking injustice of it all.

Most of the time he was fine, and he liked sitting in the seats a little apart from everyone else looking at his DVD and the Thomas & Friends book he's received. But one little cousin just loves getting him all riled up, and the 2 of them had a few "wrestling" sessions. Often he just headed off whenever he felt like it, so my head was turned watching out for him and checking to see where he was and what he was up to. It would have been a heck of a lot easier if we were all in a smaller room.

After gulping down the meal we moved to some seats in the lounge, thankfully free of other customers so we were less likely to disturb people. The disco got going and our gang joined in. Even Duncan indulged in a bit of dancing now and then. They loved it.

Up to now, only Duncan had opened a gift, special privilege and all that. We knew that letting the littlies open presents in the lounge of a hotel could be just a demonstration of the effects of entropy so we all trooped off to my brother's house. Entropy still prevailed, but we had a better chance of gathering up all the pieces in the more familiar, enclosed space and knew that, if someone got home and realised that bits of their new Hot Wheels set (or whatever) were missing, they'd be able to get them back later.

The children, bless their acquisitive little hearts, liked the gift allocation bit the best. Lady gained a CD player, clothes and a beautiful necklace, Thomas got DVDs, (Doctor Who and Speed Racer) as well as Narnia dressing up clothes, Duncan has another Thomas set and Star Wars dress-up stuff. The adults all got new stuff too, and very nice it was.

Perhaps next year we'll try something different, but we'll certainly have another family get together. It's so lovely to see them, and for some freaky reason or other, all the children in our extended family are delightful, sweet, cute and brilliant and we adults still really get on well and actually, genuinely enjoy each other's company!

19 Dec 2008

A sense of style

Lady has cared about how she looks for a long time. Since she was a toddler she has chosen most of her outfits though often when she was younger, she'd mix it up in clashing colours that had me rolling my eyes and envying her nice, neat, pristine and coordinated friends. But I usually let her make that decision, knowing there were plenty of other battles that I had to win. As she's grown, she has developed a cool and easy style and always looks good. She's so different from myself at her age, when I had no confidence about clothes and hated shopping, worrying about what my friends might think about what I wore, and just having no idea what looked good on me.

Thomas too likes to dress to impress, and gave me shopping instructions for the Big Family Christmas Party we're going to on Sunday; black trousers and a button down shirt. He's not gone too far into junior meterosexual territory yet, hasn't asked for hair gel or anything, but he makes an effort now and then.

So far, Duncan has only worried about clothes when he's been dressing up. Then he'd pull together a look using stuff from his dressing up box, but also the drawers and wardrobes of all the family, if he thought it fit the part.

But when we were in Florida, I was buying tops for the children, and he picked a couple that he wanted. One was a Spiderman shirt printed with a picture of a rippling chest, which looks so funny on his skinny frame. But hey, he wanted that one. He also chose a bright Disney shirt and has worn it often since we got home.

I've usually laid an outfit out for him each morning, but more often than not he wears what he wants. Recently there was another new development. We were in the supermarket, home to dough-nuts, sweets, crisps, DVDs and toys and so full of temptations for a boy like Duncan. He looked at these in turn, chose a packet of gum, examined as usual the case of the much wanted but at the same time feared Dinosaur DVD, then said, "go see boy's things" and walked off to the clothes section! I wasn't expecting that. He liked the look of shirt/waistcoat combo, saying it was a "Lord of the Rings top." (Lady's just explained why; he's seen clips of the Hobbits on YouTube.) But he opted instead for a stripped and very handsome looking shirt, and a Superman T-shirt. Now he has a special outfit for the party too.

I just need to think about what I'll be wearing now. I can't let my fashionable children down.

18 Dec 2008

Thomas the man

Thomas told me his plans for adult life last night. He's decided that he'll be an actor and a doctor. He'll do each job part time, and no doubt expects to excel at both. He intends to have 5 children to be called, Ethan, Thomas, Ricky, Melanie and Marie, born in that order and each a year apart. The first child will be born when he's 20, which as we all know is absolutley ancient. He will marry a kind and funny woman who works as a gymnastics coach. Perhaps he's been inspired by some of the lovely and pretty young woman who teach his gymnastics class. They'll probably marry after Ethan is born so he can go to their wedding, and they'll all live in a 8 bedroom house (1 room each plus 1 for guests) in a warm part of the US. The children will all be home educated so they can have more fun. Lady was questioning him about his parenting style, asking if he'd be very strict or easy going, he replied, "I'm not going to be strict, why would I do that? I'll let them take a piece of fruit whenever they want and have a bowl of cereal whenever they want. But they'll always wear their seatbelts in the car." Lady also asked if he'd smoke when he's older, "No way!"

Nice to know he's got a plan.

14 Dec 2008

Lap it up

Duncan has decided that he likes to drink milk, lots of milk. However it has to prepared as in the Disney film The Aristocats. He pours the milk into a bowl, adds a sprinkle of cinnamon, a dash of vanilla extract, a smidgen of sugar and a dollop of double cream, then he blasts it in the microwave. On a few occasions he placed the bowl on the floor and lapped it with his tongue, but realising it's an inefficient way for a human to consume their vittles, he went back to the more traditional method. Once, perhaps inspired by the relish with which the cartoon cats dinned on the concoction, he made a large portion up for our dog Pippi. She tried it, but didn't like it and I poured it away explaining that dogs don't like milk, just people and cats. "And cows," said he.

Lady's friend from next door has been to stay with us for a few nights. The girls enjoyed spending lots of time together, with late night chats and lots of time spend enjoying such pre-teen delights as the Jonas Brothers and HSM (if you don't know the acronymn, you'll not care) on YouTube.

Best of all, Lady went with her friend to a school disco on Friday evening. The pair got all dolled up, Lady wearing a bit too much silvery eye shadow, so it fell under her eyes, panda fashion. A quick wipe sorted her out and off they went to face the music. I was told afterwards, that 3 boys had asked my 10 year old child to dance. Oh my. Is this the beginning of a new phase? Will I know how to strike a balance between allowing her freedom to have fun, make new friends and enjoy her journey towards adulthood with protecting and sheltering her and teaching her to make safe choices. Ah well, she's still very young. I'll just take it as it comes.

Thomas was a bit put out that he wasn't able to go dancing too. He rocks the joint when he's dancing in his room, not that he knows I've seen him. He asked "why do the girls get to go to the ball, and I don't?" So endearing! My sister pointed out the Harry Potter connection; school balls instead of discos. To make it up to him, I took him to the soft play area this afternoon and he ran himself ragged while I supped tea and read, so different from when Duncan's there too. Duncan whiled the afternoon away by lounging in the bath (the boy has at least one a day) and checking out cuckoo clocks on ebay. He's got his eye on one that costs over £200. I bid on a couple but didn't go quite high enough so I still have to get one from somewhere before Christmas. And he's very particular about what it must look like and how it must perform. Bum. At least I won a Lego Spiderman so perhaps that'll distract from any potential clock deficit.

11 Dec 2008

More dicussion on prenatal testing, disability and accuracy

A recent post generated some great discussion. My reply there became too long, so I've put it down as another post.

In an earlier comment I wrote:
“Gonzo Girl mentioned that she thought more DS births was good, not because it's more evidence of a caring society (as interpreted by The Mail) but because people will know more about how life can really be for people with DS when they have more chances to meet such people.”

(I should have made it clear that this is just how I interpreted what The Gonzo Girl had written, but I could be wrong. I hope I have not misrepresented her position.)

In response, Tom wrote:
This is an interesting statement, and one that didn’t really get addressed on BadScience through all the shouting. It seems to me that, if only for social reasons it admits that there is a personal cost to being disabled. It then goes on to argue that it would be better if more people paid this cost because there would be a benefit to the whole group. This seems like a good deal for the current members of the group and a bad deal for the new ones.

I am rubbish at dealing with disabled people (well, not if your just missing an arm, or something, but I’m sure you know what I mean) for precisely the reason Gonzo Girl mentions. I have very little practice. So I guess I agree that increasing the numbers might bring benefits. Equally one never knows, you might end up with ‘Downs Plague’ headlines in the Mail. Predicting the reactions of society as a whole is a tough business.
I think that in many ways, being in a misunderstood minority is a reason for some of the difficulties disabled people face. Like Tom said, many people never encounter (at least not knowingly) disabled people, especially those with learning disabilities or atypical neurologies like autism or Tourette's. I'm not sure what he means about this seeming "like a good deal for the current members of the group and a bad deal for the new ones."
I think we’ve hit one of the things I think people misunderstood. The point, as I read it, was that parents were in a difficult position and the last thing they needed was to be told emotionally loaded stuff about the ‘kind’ decisions other parents were making that was simply untrue. It seems to me that it IS a bit scumbaggy to tell parents contemplating an abortion stuff that isn’t true (whether for, or against) to further an agenda, moral or otherwise.
The woman from the DS society said that it seemed that parents are "thinking more carefully" and that there now is "greater inclusion and acceptance, with mainstream education having a huge role. We think this plays a part in the decisions parents make." There's nothing wrong with her saying that, but the release of and focus on badly interpreted data is wrong.
People on BadScience can be kind of rough. On the whole, I find, they mean well. Even, or perhaps particularly, Dr Crippen seemed to me to acknowledge and be quite annoyed about the problems faced by the disabled (I would probably not have put the comments about the paralympics in quite the way he did.). One of the difficulties is that experience doesn’t necessarily make you right and people on the forum will challenge you regardless.
The dangers of quackery come up on BadScience all the time. It is a plague for disabled and {whatever everyone else is called} alike. Taking autism as a case apart, it is pretty much only the alternative medicine/anti-science movement pushing a cure. You DEFINETLY have everyone (minus a few trolls) at BadScience on your side on this point. If you say ANY cure is a bad thing, then that’s something else.
I really like the Bad Science blog/column, forum and the related blogs and appreciate the work they do in tackling quackery and bad science in all its forms. Heck, Ben linked here a while back and generated more hits in a few weeks than I'd had in the couple of months before. I've written about the importance of accurate science, as has Michelle Dawson many times (she's an autism researcher) as well as many of the people on the Autism Hub blog aggregator.

I'll just say wrt a cure for autism, I think it's as likely as a "cure" for homosexuality, and the idea of something that would cause such a huge change in neurology is worrying to me. But should it be available and safe, I would let my son decide for himself when he's an adult. If by cure you mean, helping him to communicate more effectively, regulate his impulses and learn how to maximise his talents, then fine, bring it on. As for your question on terminology, in the context of these discussions I say non-disabled. Some say, temporarily able-bodied.
One of the feelings that I came away with from BadScience was that people are sensitised to the word ‘pity’ and almost start the conversation with “I don’t need your pity’ (not you I hasten to add). The thread in BadScience ended with myself and a guy called The Nameless talking about what we actually felt that had been interpreted as pity.
Disabled people have been made objects of pity for so long. Some charities have misguidedly presented a face of disability, usually a poor, innocent child, that is as pathetic and needy as possible to evoke pity and funds. Pity usually precludes respect and dignity. Empathising with another's pain or difficulties is fine, especially when it's understood that many of those problems come from other people's attitudes and systematic failures.
The page you linked to gave me some stuff to think about. At the very least I think people are definitely less careful around disablist (new word on me) language than they are with sexist language. It can be all too easy to talk about a group of people you don't expect can hear you in a short hand way and say things that, if held up to the light, you have no choice but to back peddle away from like crazy.
I appreciate Tom for taking the time to read that. There's a good (short) post here about disablism and language.

In response to Michelle's comment, Tom wrote:
This is the main point for me that never got resolved on Bad Science. The information in the DS story may *technically* have been accurate, but it was being used to make a claim, 'society getting kinder', that created a totally false impression. Telling people that, in this sense, society is getting kinder IS giving people false information. I would be shocked if Ben Goldachre was against people having access to correct information presented in a proportionate way.
I think Ben Goldacre was speaking out against inaccurate numbers. I don't doubt that there is data suggesting that conditions now are better than before for people with DS; higher life expectancy, fewer people in institutions, more people employed. There probably is evidence somewhere of a more accepting attitude to the condition in society at large too. The DS births data however, wasn't evidence of such a thing and I agree that it's wrong to interpret it as such like many media sources did.

Michelle wrote:
But I also disagree with Dr Goldacre's (and Dr Crippen's) stated position that, because some people might feel bad, it's "scumbaggy" to raise concerns that are important to disabled people. Or to provide accurate information about differences in ability.

What Drs Crippen and Goldacre are demanding is unquestioning adherence to the "realities" of disability, according to their views.

They want discussion of major issues concerning disabled people to be shamed and silenced. They don't want their ideas tested (might make some people feel bad) and they don't want disabled people to get in the way of their certainties.

At least, this is what they have so far expressed. As a great fan of Ben Goldacre, I was surprised to see him take the position that some ideas should not be tested or discussed, on the grounds that some people might feel bad.
I agree with this.

Tom responding to Michelle again wrote:
I couldn't disagree with your interpretation of the Bad Science and Dr Crippen pieces. Dr Crippen rather complicated things with his digression into the Olympics, I can understand why his post upset you.

In so far as Bad Science goes, are you just referring to the text of the link to Dr Crippen, or the article as a whole. As mentioned I interpreted the 'scumbaggy' comment to refer to giving factually untrue information to parents. If you have a wider criticism of Ben's article I would be very interested to hear.
Dr Crippen just went weird and ranty. I felt Dr Goldacre's post was fine except for this quote, "For many parents the decision to terminate will be a difficult and upsetting one, especially later in life, and stories like this make a pretty challenging backdrop for making it."
I've explained why already. And yes, I was upset by the text of Ben's link to Dr Crippen's article, never mind his linking at all to what I considered a badly written post full of speculation and negative stereotyping.
By the way, in coming here I realized that you folks had some what more reason to be offended than I had at first supposed. I'm still chewing that over. I just don't want it to come across like I'm busting in telling you you're wrong. It just bugs the hell out of me that we can read the same article and take away something totally different.
If Tom is referring to Dr Goldacre's article, then I think he and I have interpreted it the same, though I disagree with the small section I've already mentioned. I'm not offended, I just don't agree with all the ideas presented.
Dr Crippen's style makes defending him harder than it might have been. I can see a point in what he says about the Olympics that I have some sympathy with, but the way he put it isn't at all helpful. I won't defend that issue unless you're really keen.
I thought Crippen's paralympics rant was ridiculous and his trying to defend it by saying he thinks the olympics is a waste too, didn't work. He was purporting to read the future for his fictional patient, and foresaw all sorts of dire consequences should she proceed with her pregnancy with a DS child. It was plain silly and I commented there once. I didn't bother to try again as he was clearly uninterested in a reasonable conversation, and many of the other commenters were extreme in their views.

As for assigning mental states onto others, it's best just to discuss the content of what they wrote. It's not possible to tell if they are offended or upset unless they directly say they are, like when I wrote in my post that I was saddened by the comments on Crippen's blog and more so by Dr Goldacre's link text.
"None of what I wrote or quoted was challenged in any rational way."
I agree there was a bunch of stuff that didn't get dealt with. That's why I followed you guys here. Personally I think it goes both ways. There seemed to be a lot of unwillingness to accept, what was for me, the central point of Ben's article, that the reasoning behind the "society is getting kinder claim" is simply wrong and giving wrong information to parents making these difficult decisions is bad.
Well yes, the discussion in the comments got derailed from discussing the original post. But there were many issues raised that are important some of which were dismissed with a jibe about the author's emotional state. Some of the posts (I've just had another look) are obviously from people who are against the provision of all legal abortions and there's a strange comment trying to compare selective abortion to walking away from or killing off a child who acquires a disability; not at helpful or relevant. I think you Tom, were one of the few people who tried to actually engage with what Michelle and The Gonzo Girl wrote, instead of scoffing at them.

9 Dec 2008

Homepages - Tales From The Irish Blogosphere

Doesn't it look great! There's a great new book out. It'd be perfect for Christmas presents for all your friends and family. It's called Homepages and here's some more information:
Homepages is a unique collection of stories and photographs, the first of its kind in Ireland. The nation’s best bloggers hold forth on the theme of “home”, covering everything from pets and expat life to parenting and the Kellogg’s Variety Pack. By turns hilarious, heartbreaking and thought-provoking, it promises a captivating read and showcases some of Ireland’s best undiscovered writing talent.

All proceeds from the sale of this book, compiled on an entirely voluntary basis from submissions made via this website, go directly to Focus Ireland, who provide services and support for people who are homeless across Ireland.

The book is now on sale for €14 ( £10.96 ) via Lulu.com on a print-on-demand basis. Click here to order your copy!

Now doesn't that sound like it'd be a good read? It'll make you laugh so much you'll wee, and cry like The Champ's just died, or provoke such deep thoughts that you'll be modelling for the next Rodin.

These are the contributors:

It is after all, a list of the nation's best bloggers, or rather, the nation's best bloggers...and me.

Plaudits to Catherine Brodigan for getting this organised. She's done a marvellous job and I hope it sells like hot pies and makes loads of money for Focus Ireland.

One night in Dublin

My dad came over early so leaving the children in his capable hands, we caught the train to Dublin, buying coffees and bacon rolls to sustain us. Ah the innocent times before we knew that dioxins had also entered the food chain in Northern Ireland pork.

Dublin is a place I always enjoy visiting. The day was cold, the sky was blue and the streets around Grafton St near where we stayed, were full of folk wrapped up like Inuit. Having determined that this was to be a time to relax and unwind, I was in no mood to tramp for miles around the streets like we usually do on city breaks. This time we took taxis wherever we wanted to go, and I wore boots with silly heels, not my usual trainers.

We dropped our bags at the hotel and dandered about, stopping for lunch at Wagamamas, as recommended by Mark. After a few hours of strenuous chilling out, we decided to go see a film. I wasn't in the mood for anything heavy or depressing, so we opted for the Coen brothers' "Burn After Reading." I didn't like it much, too wry, too much stupidness and characters doing random stuff that made no sense. But there were a few chortles to be had and it fulfilled the purpose of passing time in an effortless manner.

The next task was to have dinner. We decided to heed the advice of big brother Trevor and went to The Cedar Tree Lebanese restaurant, ordered a set of mezes and a bottle of red wine and went to work, and indeed, it was good. Now either the Lebanese wine was particularly potent or I'm a light-weight, but I was good for nothing after and despite our good intentions to prop up a bar somewhere for a while, we headed back to the room and watched the last 10 minutes of Wallander.

A favourite part of spending the night away from my children, is the ritual of a hotel breakfast: the fruit juice, the fresh fruit, then the huge plate of pig meat in various configurations accompanied by some chicken embryos. But the dioxin contamination meant we were denied this pleasure so he had an omelette and I had waffles with maple syrup, not as good as the real thing.

Thus fortified we had time for another dander around. Since Gordon was the birthday boy, I was happier than I usually am to spend time in music shops where he ogled bass guitars and in HMV as he browsed CDs and DVDs. We went around the department store Brown Thomas for a bit, wondering just how anyone can bring themselves to buy that sort of stuff at those sort of prices.

Another chilled out train journey north, then leaving Gordon in Belfast as he had to go into work for the afternoon, I headed home to relieve Dad from child care duties. He told me that the children had been absolutely no trouble at all. Isn't that just what you want to hear from your baby sitter?

After about 32 hours away from home, I felt like we'd had a week off. Just a little bit of adult time goes a long way. Thanks Dad for letting us have it.

5 Dec 2008

Question for Dubliners

Have you any ideas on where I could take my husband for a good meal and a nice evening out in Dublin this Sunday? It's his birthday, so my dad's going to babysit overnight* and we'll be taking the train down (Down to Dublin) and staying at Brooks hotel on Drury St, so somewhere a tipsy stagger away would be nice. I see there's a restaurant in the hotel, which is probably fine but there's often a better atmosphere in other establishments.

I'm not looking for anything fancy, just so long as the food (and the crack, oh fine Miche, craic) is great we'll be happy. It seems loads of places are closed on Sunday evenings too; curses on them.

*thereby crushing the perception that life after birthing a disabled child is damaged forever.

4 Dec 2008

Prenatal testing and disability

There have been several articles in the UK media recently about prenatal testing and the number of children with Down Syndrome born each year. Some stories have suggested that an increase in the number of children born with Down syndrome, suggests that we're living in a more caring and accepting world, while others have criticised the interpretation of the data, suggesting that the percentage of fetuses with Down syndrome to be aborted has not changed.

Via Michelle Dawson's TMoB board, I discovered a couple of articles in the Times, one which disgusted me and one which I cheered. The first, by Minette Marrin, contains many outstandingly ignorant and prejudiced statements, like this:
I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now.
She goes on to preempt any disagreement with her views:
I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful; there have been vicious attacks on me in the blogosphere by disability-lobby extremists. My point of view does not make me a heartless eugenicist.
I think that this article is hateful. I'm not sure that my saying so counts as a "vicious attack" nor that I'm a member of the terrifying "disability-lobby extremists". Watch out, they're coming to a town near you with their torches, pitchforks and calls for ramps, assistive communication devices and individualised education plans!

I don't think her views make her a heartless eugenicist, but they do display a belittlement of the value of disabled lives, and a inordinate emphasis on the difficulties faced by disabled people, as if non-disabled people enjoy a charmed, perfect, blissful existence. See this example of Ms Marrin's reasoning:
In a hyper-sexualised culture that worships bodily perfection, beauty and sexual success, adult life is also bound to be painful for people with Down’s.
Isn't she aware that many adults, even the non-disabled ones, have relationship problems and broken hearts and personal insecurities?

India Knight, also writing in the Times, issues a slap down. It's lovely. In response to Marrin's line:
...what more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?
Ms Knight writes:

I like 'virtual certainty'. I mean, f*** science. Bugger medicine. Take your research and shove it. 'Virtual certainty', innit? No jaw-dropping medical advances taking place every year, dear me, no. Sure, your hole-in-the-heart baby - to pick one example at random - would have died not very long ago, and is now likely to lead a full and active life, heart fully repaired, as though nothing had happened. Life expectancy for people with Down's has doubled since the 1980s - but hey. Let's not nitpick. Or, you know, believe in the fundamental decency of human beings, or in the possibility of finding joy - and pride, and strength - in unexpected places.

Applause from me! And to another one fighting the ignorance, Nick, dad to Jacob and his siblings, who tackled some blogger's assertion that people proceeding with a pregnancy when they know the baby will be disabled, view their children as pets. Nick responded:
If you are going to approach a subject of such emotive power as the right for people who have a chromosomal difference to exist, it is a noble idea to invest your strongly held opinion with first-hand experience. Go meet some downsies. Get to know them. And possibly when you’re at it meet a few blind people. They’ve been holding us back for ages too. The autistic ones are no better. And cancer sufferers are an insane drain on society as a whole. Idea: burn the hospitals altogether, and the clinics, and shut down any factories that make wheelchairs or crutches or other such resource-squandering gimmicks. Let the bastards with heart issues die off. The car-crash victims probably did it to themselves, so just pull the plug now and cut down on the greenhouse gas. Double win!!

And when they’re all conveniently out of the way we’ll sit down, you, me and Dr Mengele, and we’ll really have it all to ourselves. Because there won’t be anyone else left.
I came across another wonderful article from the F word blog. The author, Victoria Al-Sharqi, is a disabled woman who declines naming her conditions because, as she says, "if you can’t label me, you can’t define me and you can’t write me off." She writes:
Disabled people who do oppose selective abortion are usually dismissed as unqualified to speak about the topic. I lose count of the number of times that I have been told that the ‘seriously handicapped’ clause does not apply to People Like Me. It applies to those poor people who can’t speak or even wipe their own bottoms, let alone appreciate life for what it is. I just don’t understand what it means to be severely disabled; I’m blinded by the relative mildness of my particular handicaps. But fear not, enlightenment is at hand. While I may not understand severe disability, there are plenty of able-bodied people who do, so why don’t I just sit back and leave these difficult questions to the real experts?
I think that every autistic person I know who has written publicly about autism and/or disability issues, has been told the same.

I wrote about the development of a prenatal test for autism and selective abortion a few years ago here which can be summarised by this excerpt:
Prenatal testing puts pressure on parents, mothers in particular, to reject a specific child. This is a whole different issue from that facing women who are pregnant and do not want any child at that time. Woman are getting the message that they would be irresponsible to chose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'. This is eugenics. It is anti-feminist.
Yesterday, I read another opinion on all this. A GP blogs about a pregnant patient of his who has discovered that her fetus has Down syndrome, who wants an abortion and who "feels particularly bad about it because she too has read and listened to the recent ill-informed media barrage which alleges that more and more parents of Down’s babies are deciding not to have abortions."

He's critical too of the Down's Syndrome Society's chief executive for suggesting that the higher birth rate of Downs babies "seems to show that parents are thinking more carefully before opting for termination."

Dr Crippen writes:
The Down’s Syndrome Association live in the same cosy world of politically correct half-truths as the para-olympics. Oh! Dear me, how dare you suggest that watching people play tennis in wheelchairs is not just as exciting as watching Wimbledon? How dare you suggest that Down’s Syndrome sufferers cannot lead a completely normal life?
Oh the sarcasm kills!

The post contains other points I take issue with and I wrote about some of them in my comment on the blog. Michelle Dawson also criticised the post but her concerns were written off and she was labelled as "getting emotional, silly and abusive". The majority of the comments there just make me sad, but not as much as seeing Ben Goldacre, writer of the fantastic Bad Science blog, for whom I have great respect, linking to Dr Crippen's blog post on his own MiniBlog with the description, "Some Crippen realities on Downs. It really is a bit scumbaggy to make parents contemplating a termination feel guilty"

Does Dr Goldacre really believe that we shouldn't discuss these issues for fear of making prospective parents feel guilty? Aren't the lives and views of a whole group of people, deemed by society to have lives that are better not lived, not important at all? Is this post "scumbaggy"? Isn't it worth pointing out the way the NHS screening program works, as explained here:

The NHS' so-called 'best practice' information leaflet devotes less than 3 pages to informing parents about Down syndrome. Most of this limited information is about maternal age and chromosomes rather than people. People who have Down syndrome are not featured talking about how they view their lives. Nor are their families. There are no photographs of people who have Down syndrome. This 'best practice' guidance then devotes 12 pages to describing the screening and diagnostic process in detail. The message? On balance, parents should be far more interested in learning about the screening process than the condition actually being screened for.

Is that post also "scumbaggy"? Is it wrong to suggest that changing attitudes, better education and medical care, and more interaction with actual disabled people may be leading some people to either decline prenatal screening for disabilities or to elect to continue with a pregnancy despite knowing the child is affected?

I find many of the comments on these articles and blogs disturbing in their libertarian fuck you attitude. There are many who resent the welfare state, and laws to make society more accommodating of disabled people. Dave Hingsburger had a poll on his blog recently. Like the majority of those who voted, I answered the question "the most frustrating thing about disabilities is..." with "the attitude of others." Is it any wonder?

2 Dec 2008


Duncan is really into his Roller Coaster Tycoon PC game. He's been trying for ages to recreate some of the Disney World/Land rides, in particular, Space Mountain. He kept showing me YouTube videos of these amazing versions of the rides, and bugging me to download them for him. I didn't know how or where to get the sets from. He's been going onto the Atari forums and scrolling through the posts. He showed me a few topics that seemed to help. It took me ages to piece together what I had to do though. It's not bad, what he managed to achieve. He typed his request, and found the relevant pages. He managed to read enough (and find the right images) to know when he was on the right track. He has tried so hard to make the coasters by himself, and he has designed some fabulous scenery, including a great version of Expedition Everest, with snow topped mountains and all. He has a great feel for how to use the program, how to build the walls and change the landscape. It's quite astonishing really.

Since I finally figured out where to get the set of files he needed to build Space Mountain (Mission 2) I helped him get the files in place. He asked me to help connect the multiple pieces, so I gave it a go. He was very disappointed with my efforts. I was sent away and he got to work himself. He kicked my ass at the game, building a beautiful, synchronised version of the ride using the well designed scenery of someone kind enough to share his work online.

I downloaded Google Sketchup (a cool, free 3D modelling program) and let him go to work, after spending a couple of minutes showing him some basic techniques. He knew what to do and had some ideas to try out instantly. The boy's got skills at stuff like that. Perhaps it'll develop into something marketable some day, but for now, he's learning loads through his interests and enjoys them. That's good to see.

Get outta the pool

It was just too cold. We managed to stay in for about 5 minutes. Duncan had me pull him around, going from side to side (good arm work out) and Lady obliged to play the role of the crocodile leading to squeals of delight when she closed in. But suddenly he climbed out and headed, hunched and shivering, to the stand of showers. I turned the shower on and he stood under. Thomas joined us, then Lady came to complain at being left alone. The boys wouldn't get back in. I told Lady I'd take her swimming one evening without them.

So we get dressed again and as I leave, I tell the man at reception that the water in the learner pool felt colder than usual, he said he'd look into it. It's probably just because the air temperature is so low. Well, it was a heck of a lot of effort for 5 minutes of swim time.

I'll have to find us another activity until the weather improves round here.