21-3

AJ_DSDay

Today is World Down’s Syndrome Day. Celebrated on 21st March, to salute the fact that people with Down Syndrome have three (rather than two copies), hence 21-3. Clever that!

The value of these sorts of days is somewhat debatable but I do love having a day when people with DS are made visible. There have been some lovely blogs from the community of bloggers that I belong to, Team 21, and it is great to see so many happy people and families. In our moments of honesty, we would probably all say it ain’t always easy but we know that we have children of great worth who bring as much and as little to the world as any other child. And as I have often said, I just wish AJ “only” had Down’s Syndrome.

Anyone up for Weird, Inexplicable, Undiagnosed Brain Damage Day? It would probably have to be celebrated on April 1st!

All about Ava

So, this post is just going to be about Ava-Jane, nothing else, no political rants, promise.

I have had the chance to go to a couple of AJ-related meetings this week. We saw her neurologist on Tuesday and then had her Annual Review at school today.

We’d been pressing to see the neurologist for a while. We had even been to one appointment and the receptionist forgot to tell the doctor we were there, so she went home. Now, I love the NHS, it has seen us through all sorts, but I did have to try not to feel too disappointed that this chap was still in a job when we returned this week. 

We have been worrying about AJ’s spasms that seem to be getting worse and disturbing her more. She has two separate things that could be epilepsy or could be dystonia. Ah, yes, that’s a whole load more medical we have to get our heads round, i.e. Google. Unfortunately they are both things that have loads of different types, so there is quite a lot of reading to be done. 

AJ has big severe spasms, Otto used to call them her “Ninjas” as it looks like she is about to do a massive karate chop. She also has a tremor on her right side, sometimes her right hand can be almost constantly moving.

She has been on a variety of medicines to treat both these things as well as the stiffness she has. Her medication programme is basically to try something out and gradually up the dose until we note either a beneficial or negative effect. And you’ve got to watch out that her anti-stiffness meds that are designed to make her too floppy, don’t make her so floppy that she can’t do basic things like sit up or wear a riding hat.  Fo is essentially in charge of her medication, the whole process is a series of educated guesses by the doctors and by us and Fo knows AJ better then anyone and can notice changes better than any doctor who might only rarely see AJ. And obviously she is a very smart woman, my Fo. 

The good news is that the tremors have reduced a lot, the bad news is that the Ninja spasms have got worse. It is quite difficult to gauge how much discomfort AJ feels. Her general demeanour is so joyful and she will always manage to raise a smile however much pain she is in. And obviously as she has not got much communication, it is hard for her to be specific about aches and pains. But these spasms are definitely causing her discomfort and also embarrassment. It is heartbreaking seeing her little face looking bashful and then giving one of her “no one, not Job, not Sylvia Plath, not Morrissey, has ever been sadder than this” faces. See below for examples of this face:

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So we went to see AJ’s new neurologist. Her old neurologist has finally managed to retire. The very taciturn but wonderful Dr Pike was one of the original three wise men who saw AJ back when her brain damage first set in. He had been trying to retire for a while but kept on coming back to see AJ, partly I think because he found her a fascinating case. She was the first patients with whom he had used a Quaver as a diagnostic tool – he could test her right-sided brain functions by seeing if her vision would track her favourite cheesy snack down and to the right. She still has trouble seeing anything on her right, which was something we discussed with her school, more on that later. Though, I do like to think that Dr Pike (he did look a bit like a pike) also didn’t really want to retire because AJ is so damn cute.

But AJ’s new neurologist, Dr Ramdas, is young enough not to be retiring anytime soon, so she will probably be off on maternity leave just as soon as she has got to know AJ! She seems great but did not offer us any major breakthroughs – more fiddling with meds, trying another one and upping the dose, seeing what the outcome is and meeting again in three months’ time. I do still dream of a resolution, where a one-off pill or a slap round the head would just fix it and AJ would get her right side back and her balance restored. (For info: I don’t slap her round the head just on the off chance.)

So, on we went to AJ’s Annual Review on Thursday (if the times refs jump around in this post it is because I am writing it in chunks!). When we go for a parents’ evening at Otto’s school, you see one teacher, maybe two if they are job sharing, when we go to AJ’s; it’s a panel. We have social workers, visual impairment specialists, teachers, heads of department and therapists of various flavours – even without the physiotherapist, who couldn’t make it (“Again!” says Fo), we had a pretty full session. I do love the fact that AJ has all these professionals on her case. Her main teacher really does seem to be properly on a mission to sort AJ out.

The debate we always have in these reviews is whether AJ, who has both speech and mobility impairments, should be in a class with the speech impaired or the mobility impaired. I have always told her “If you need to get what you want, you either need to walk or talk. You can either get it yourself or you can ask someone to get it for you.” So, should we and her school focus on the walking or the talking? The general consensus seems to be: the talking. I really don’t think she is ever going to walk and she is absolutely lethal with her electric wheelchair. Her teacher said that they don’t really have any radiators left in the classroom as AJ has taken them all out, presumably along with quite a lot of staff shins.

But her talking is coming along. She has got a proper range of vocabulary and she is beginning to put it together into basic sentences. The aim for this year had been to move from two words sets to three words sets. So before she just had things like noun + intransitive verb: “Me go”, “Me eat” or noun + adjective: “black cat”. These utterances really don’t give you enough information to be really able to work with and help her much: “Me go… where?” “Me eat… what?” or “the black cat did what”? But if you can put three words together, you can say things like “Me eat cake” and with that, you can get quite far in life.

So, she is going to spend some time in a class where people are more vocal. The staff do have to weigh this up – to what extent it will be good for her to spend time with people who speak more even though it might not be so good for their progress.

One of the reasons for these Annual Reviews is to the review her statement to decide whether she needs more/less/different care. It’s all supposed to be very official but there is some sort of administrative thing going on, which means it is not worth making any changes to the statement but then all the people who know AJ best – us and the wonderful professionals who care for her – basically decide what would be best for her and then we discuss what the school can afford!

“New hat… Me ride April”

 

She has just got her first riding hat and she can sit up while she wears it and she is very proud of herself.

So, in conclusion… Ava-Jane will probably never walk or sit up straight unsupported but she might well be able to progress in her communication. Her spasms are not epileptic, epileptic seizures are caused by the brain and also damage the brain, so the thinking is that while they make her uncomfortable, they are not doing her lasting damage. We might happen upon a drug, a dosage or a combination of drugs/dosages that alleviate the spasms and the tremors while at the same time not impeding her. Ava-Jane enjoys life as much as anyone I know. Statements, medication, doses, blahdi-blah, yeah it ain’t easy but being AJ’s parent is the greatest gift I have ever received.

Tales from a wonderful family holiday, some cute pics of AJ and just a wee bit of Armageddon

So, 14 Baxters descended upon Sri Lanka for two weeks of sun, sea and sand and fun and frolics. The poor locals must have been worrying that the days of Empire had returned. We chose Sri Lanka because it was roughly equidistant between the UK and Australia, where brother Toby and his mob live.

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The whole lot, reading from left to right: AJ, Zac, Faith, Toby, Guin, Mary, Nora, Molly, Me, Josh, Fo, Matt, Laura, Otto above. More of same below.

It was AJ’s first time on a plane and, as is our wont of not doing things by halves, we decided to start her off with a ten-hour long hauler. The flight itself was fine, ably assisted by some pretty potent sedatives she had been prescribed, so she slept the whole way there and back. The challenge was getting on and off. They have these teeny weeny wheelchairs that are specially designed to fit along an airplane aisle, which are great but they don’t have any support. I turned away for a second once and AJ tumbled to the floor, oops. We also needed to have special plane seat for her, which needed assembling and disassembling as all the passengers on very full flights tried to get to their seats. Incidentally at the other end of the transport scale, we also discovered that tuk-tuks are also not massively wheelchair friendly.

Anyway, the holiday was a massive success. It was fab spending time with all the famalam. From seeing cool cousin Zac teaching the littlest ones, Guin and Nora to swim, getting AJ breakfasted by Laura and Molly, to having to stay up late and drink a shedful with Toby and Matt so Toby was awake to greet late arrival Josh. And of course and massive hats off and thanks to Mum for sorting it all out. Most of us got some sort of stomach bug, Mum was pretty touch and go for a bit and Otto was projectile vomiting on New Year’s Eve but other than that, it could not have been bettered.

On the AJ front, we are a bit worried at the moment. Her tremors are getting worse and they seem to be discomforting her. She is not one to grumble but she does seem to be in some pain. So it is back to googling yet another medical condition, dystonia, to see what can, or it seems, in this case, can’t be done. So far it seems to be: no cure, pain management.

Spot the difference. Both these photos below are of me and AJ going for a walk, one  was taken in Sri Lanka and the other, a couple of weeks later, in North Buckinghamshire. Can you tell which is which?

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So enough about that, on to Armageddon. I was listening to a very serious political podcast, Talking Politics, link here. And they were discussing how Trump and his team probably don’t really expect all the ghastly things he is trying to do to get past the judiciary. The US constitution is set up to rein in the president’s power but he is quite happy having the judges stymie his moves while he trash talks them on Twitter. But when something bad happens, and it will, he will then be able to say, “I told you so, I warned you there were bad dudes and those judges let it all happen,” and then he would have popular support for his arseholery. The academics on the podcast were very careful not to stray into anything that smacked of conspiracy theory but it got me thinking. Now, I’d hate to think of myself as a conspiracy theorist but… taking this thinking just a little further, what Trump really needs right now is a 9/11 all of his own. Even though Dubya was caught looking gormless, reading a kid’s book about a goat as the towers fell, he did somehow manage to turn it around and present himself as something that enough people considered to be presidential in adversity. Likewise, Maggie Thatcher’s ratings were through the floor in the very early eighties when Galtieri conveniently invaded the Falklands/Malvinas for her and she was suddenly the new Churchill.

So just imagine how much good it would do Trump to have some bad dudes do some bad shit, to make him look like some sort of prophet/saviour. And now to stray firmly into the realms of the conspiracy theory, is it entirely impossible that he and his team might try to engineer this? I mean, if it can occur to me, they must have game-played it in some darkened room somewhere, no? 

If I were a betting man, I would place some money on one or all of the below, which would cover all sorts of Trump bases.

  • A dirty bomb made from Iranian-supplied fissile material = so we can totally ditch Obama’s attempts to keep a lid on Iran’s nuclear missile development programme
  • Planted somewhere on the West Coast, apparently Calexit is a thing, i.e. a Californian secession = take that you pot-smoking liberal judges, oh and hopefully take out a few speechifying Hollywood types
  • Planted by a Syrian/Yemeni asylum seeker = I told you they were bad dudes

I would obviously genuinely love to be proven wrong on this but just in case, I would like to get it down in writing and out on the internet, so as to be able to bask in the most unsatisfying “I told you so” ever, as I stockpile peaches in syrup and read up on “butchering your own sheep” to await the long night that awaits us. 

Buenas noches señores y señoras…

It’s beginning to feel a lot like Christmas…

img_7629…jingle, jingle [a cacophony of wrenching gears, screeching brakes, scratched vinyl and an untuned radio a la intro to Pink Floyd – Wish You Were Here], Honk! Parp! …2016, eh? What a year!

For is it not the season when a retrospective comes to us all, whether in the shape of a round robin Xmas card or some sort of blog round up? I keep getting “Memories from Facebook”; mostly my own blog posts, so I get to relive our moments through the years. I have been blogging for quite a while now and I seem to have established some sort of a tradition of a year’s end blog post. I recently got one where I was saying “AJ seems to be having some sort of a problem with her head but it probably isn’t anything”, innocent days, innocent days.

So anyway, 2016… Well apart from Bowie making a strategic exit right at the start, us Brexiting into the void, Colombians voting against peace, yer man Trump getting elected to be President of the United Sates of America, oh for god’s sake, that still looks ludicrous, Leonard Cohen shuffling off, Prince! Prince!! [sad face] Aleppo… Aleppo… jesus christ, Aleppo, we have had a pretty crap year as a family. Mum had cancer, she made a complete recovery, but still… and my dearest, and last uncle, Nin, died. On the plus side, in the geopolitical arena, the Austrians didn’t elect a Nazi, they almost did, but they didn’t, so that’s great, yeh! While on the home front,  AJ can count to four in French apparently  (she hasn’t done it for me), and errr… she has just got some really nice red shoes. You win some, you lose some… and then you lose some more, it would appear.

I would love to be wrong but I really do think that we have just lived through a year that will echo through history, a kind of 1066, 1492, 1789, 1914, 1917, 1933 sort of a year, a year when things changed. Even when these changes might have had some benefits in the long run, they are very rarely much fun to live through at the time. A French Revolution may have ushered in many of our concepts of modern democracy but it did involve a lot of heads being chopped off at the time.

But my complete fear is that in the face of catastrophic climate change, which is a truly existential threat to us as a species, we will be dicking around with totally inconsequential issues. So in 1914 they all trooped off to what was a horrific slaughter on a global scale but by the end of the affair; female suffrage became inevitable and the process of decolonisation had begun, so that was all good, it did involve the deaths of millions of combatants and civilians but some good came of it (obvs, I am avoiding, the whole “…and the rise of Fascism/Nazism across Europe” angle). But at this time, the participants were not facing a separate threat that they needed to deal with together.

Let’s imagine the best possible scenarios that the 2016 clust*r fu*k (I hope my strategically placed asterisks avoid your blushes) leaves us with. Let’s imagine that the UK leaving the EU does not lead to the disintegration of the EU thanks to the rise of other anti-EU forces in European countries, and let’s imagine that this does not lead to war between France and Germany, which has been the historical norm across the centuries. And let’s imagine that having a US President whose campaign benefitted from Russian hacking and who has just appointed the CEO of Exxon and friend of Putin as Secretary of State does not mean the forced reintegration of states from the Ukraine to the Baltic into some reconstituted oligarchic Soviet empire.

Let’s imagine these things and let’s focus on how rosy it might all be, maybe Brexit will only mean years of negotiations with bureaucrats over the minutiae of trade laws and agreements. It might mean that, hooray, we get some sovereignty back and we get to decide just which immigrants we want. OK, in the end we will probably need roughly the same number of immigrants per year as we are getting at the mo but hey, we will be in charge of exactly which immigrants we get to allow in. And a Trump presidency might mean little more than US democracy being dragged further through the mire than it already is. My guess is that after Republicans having tried to invalidate the Democratic presidencies of Bill Clinton with the attempted impeachment for sexual peccadilloes and Obama with the whole Birther thing, the Democrats, with no control of either house, are going to fight dirty. They have little to lose. And frankly you are not going to have to dig awfully deep to find the dirt on The Donald. (a word in your ear Donald: you are far better off as a populist having the army behind you, vis The Gracchi brothers, Robspierre, Mussolini vs Augustus, Napoleon, Franco/Pinochet/Perón, the last lot tend to die in their beds)

So best case scenario… We avert global conflict but we expend all of our political resource on what I called, and I do apologise for my language, “dicking around”.

I don’t claim to be any sort of expert on any science but, and I know this is the age of the anti-expert, 97% of scientists involved in climate change think it is happening and it is caused by the actions of humans. Moreover, the people who know about this stuff think that the pace at which global warming is progressing will make this planet uninhabitable for humans within the lifespan of our grandchildren.

So, in reaction to what the experts think,  we essentially have two options:

  1. to say “Oh bollocks, what do those people who have spent their entire lives studying and questioning climate change know about climate change?”
  2. to go “aaaaaaahhhhhh, we are all going to die, fuck, what can we do about it? Let’s not waste too much time dicking around worrying about whether Russia should invade Latvia (they shouldn’t) or whether Trump is a misogynist pig who shouldn’t be allowed to walk free, let alone hold the highest elected position of the known universe, (he shouldn’t). Let’s park all of that for a moment and all get together and focus on “not destroying the only planet that we, as species, can currently inhabit.”

Oh, Ok, I do realise that my political solutions can be somewhat simplistic at times. I have always advocated a middle east peace plan that ran along the lines of “Just chill the fuck out, OK!? Both of you, give it a rest, alright?! OK, cool, so that’s settled then?”

And I really don’t have any idea of how we get ourselves out of the quagmire that we are currently in. Let’s think about Aleppo and by the time I post this post, it might be too late to think about Aleppo. We haven’t got involved in Aleppo because of the string of disastrous interventions “The West” have got involved in, in the area over recent years. And not only that, Aleppo is being wiped out not just by the local potentate, who “The West” could feasibly eradicate like a Saddam or a Gaddafi, Aleppo is being wiped out by Russia and that is a completely different ball game. And that’s the quagmire that the eastern portion of a middle eastern city that hasn’t had a global importance since the crusades presents us.

And how many more quagmires do we face? Obviously all of the below are completely inflected by my own bias:

  • Do we fight Brexit for all we are worth even though it is “The Will of the People”? Even if “the people” would feel utterly betrayed if a cabal of the liberal and political elite plot to stymie their “will”?
  • Does the apparatus of the US constitution clunk into gear to invalidate a Trump presidency through fair means or foul?
  • Do we impose what will be viewed as censorship on the internet in an attempt to combat the post-truth age? (fyi: we probably don’t have the tech to do this even if we wanted to)
  • Does the left need to get over the identity/political-correctness agenda in order to focus on the fundamentals?

So those are my biases, my worries, none of them have much to do about whether my car is electric (it isn’t) or how  much I recycle (I do my best… I try, I really do… But, you know, how much good will it really make…? I have a busy life… It was only a yoghurt carton… It was probably not even recyclable… That’s the corporates, that is, why can’t they make things recyclable…? …bastards!)

I probably shouldn’t but I am going to post all of the above as a post. On a personal level, I too have had a bit of crap year professionally.

…but this is a blog about Ava-Jane and in all of the above, I have hardly mentioned her at all, so if you have made it this far…

…she’s great. She is the funniest person I know and I know some fairly funny people.

If I have been working hard and feeling stressed, there is no better way to recharge the batteries than having a cuddle with AJ.

Ava-Jane really is progressing with her speech. She understands so much more than she used to and is vocalising a lot. Even when she is not quite getting it right, she at least knows she is, which is, I think, a big step in the right direction. For example, this evening, she kept saying “me, me” and tapping on her knee, which we all knew meant that she wanted to sit on someone’s knee. But we all insisted that she distinguish between the “m” and the ‘n” sound before we let her sit on anyone’s knee. And when she did finally, clearly enunciate “knee”, with a really good “n” and everything, I asked her “yeah but how do you spell it? You’re not sitting on anyone’s knee until you get that weird initial “k” right.” (just in case anyone is reading this who doesn’t really know me very well, I didn’t really do this, I did joke about it but only when I was cuddling AJ).

So yeah, I should be wrapping up at this stage, it is late and there is only so far that a bottle of your Mum’s Rioja can get you. 2016 is appalling vs Ava-Jane is great; I know which I would pick. Oh and Otto, look at the picture for this blog. AJ is obsessed with Father Christmas , she has a Father Christmas doll and bangs on about “Papa Chri” as she calls him. But when Christmas comes around and she gets to actually meet Father christmas, she always completely freaks out, which is kind of a good thing, after all our troubles with our childhood heroes, it is probably not a bad thing that one’s daughter raises an eyebrow to a bearded old man bearing gifts.  In the photo, you can see that Otto is with her, holding her up with Father Christmas. This was at our Down’s Syndrome party and Otto was beside AJ the whole way through the party. Because of all her extra difficulties, even at a DS party, AJ can feel like an outsider, luckily for her, she has her brother by her side. I hope one day you read this Otto and realise how much I appreciate what an amazing brother you are for Ava-Jane.

Merry Christmas and a Happy New Year to one and all. Oh by the way, the Baxters are all off to Sri Lanka for Christmas, we’re OK!!

 

Advocating and educating (the long read)

I am republishing this one because there was quite a lot more that I wanted to say on the subject (as ever, I hear you cry!). I think that once I had got my Dad brag about Otto in and a cute picture of AJ, I just hit publish, without really finishing my point. So if you read the first bit, and you can be bothered to read a bit more of the same, just scroll down a bit and pick up later.

So after the Sally Philips led media blitz, this is my new mantra: advocating and educating. I think this blog has always been about making Ava-Jane visible, to begin with, when her life was in the balance, I wanted to make her visible so that, what might have been a fleeting passage on this earth, was remembered. But as she has got better, my blog posts recently seem to have been about life as a parent of and co-habiting with a person with disabilities. I sincerely hope that I have managed to convey that it is a richly rewarding experience, one that we stumbled into unaware and unprepared, but that has enriched us all.
Something that has come up again and again during this media blitz are the interrelated questions of what is the worth of a child with disabilities, what will they contribute to society and how much of a burden will they be on society.
I have often said that we have two children, one who lucked out genetically and one who didn’t. Otto is enormously good looking, caring, charming, able and intelligent, he has just passed his 11+ with flying colours (I had better get it out there now, that this blog post is really nothing more than a cheap vehicle for me to be able to be “Smug Dad” and broadcast that last fact over the one small loud hailer that I have). So ostensibly being Otto’s parent is easy, he is the kind of kid a prospective parent would want to have. You wouldn’t screen him out. But what’s to say that he doesn’t grow up to be a murderer, an arms manufacturer, a junkie or a marketing executive? While he is as “normal” as you could want, he might go through life contributing little to society or being an actual burden.
Ava-Jane isn’t going to pass her 11+ and there are a whole load of things that she isn’t going to do but she is unlikely to grow up to be a murderer, an arms manufacturer or a marketing executive but she is going to make a lot of people happy.
So, yes, our lives have undoubtedly been enriched by having Ava-Jane in them and I would argue that Ava-Jane has had a positive influence beyond her immediate friends and family. You can take her to the pub as we did this evening and she has said hello to everyone there.
But if we were to go back in time seven years to be told that our unborn and unnamed baby would have Down’s Syndrome, heart defects, leukaemia and brain damage, would we have chosen to terminate? We wouldn’t have been losing Ava-Jane, we’d have been losing an unknown. So I think the honest answer is that we probably would have done, had we known all of that. And the world would have been without Ava-Jane; a poorer place. img_7538

One of the worries that this screening tests presents us with, is that what is an understandable decision to terminate at an individual level can be devastating at a societal level. An expression that both Sally Philips and Dr Tom Shakespeare have used is that a screen for Down’s Syndrome is a “canary in the coalmine” in that it could be a warning of things to come. What else will we be able to screen for in the future? As we saw in Iceland in Sally’s programme, screening has meant that there are no more births of children with DS there at all. Some might see this as a good thing, I don’t. But consider another thing that can be screened and has been for years: gender. “Do you want to know if it’s a boy or a girl?” A UN report claims that there are 117M “missing” women in Asia due to the favouring of male children over female, see http://www.unfpa.org/gender-biased-sex-selection

I think that the same argument between individual choice and societal effect applies here. I would be reluctant to condemn individual families in Asia from societies that favour males over females, with restricted means, having chosen to keep male children over female for economic reasons. Or families in China, constrained by the one-child policy, who believed that if you can only have one child, a male one would bring greater benefits. But the availability of that choice has clearly been atrocious.

Gender screening is obviously a simple test that has been around for years but what else have we got coming over the horizon? Going back to AJ and her plethora of conditions… Let’s say we knew that she had DS and we decided that, given our privileged situation, it was something we were happy to live with. What about her heart condition? Spotting her heart defect pre-birth is now possible, her condition is extremely common in people with DS, about 1 in 4, I believe. So maybe we would have said “DS, OK” but a heart condition that would necessitate multiple operations, “perhaps not”.

How about cancer? I don’t think it is currently possible to identify whether an individual will have an enhanced risk of getting cancer, but as our ability to analyse the human genome becomes ever more sophisticated, it is certainly a possibility. So what would we have done if we had been told that our child had a high risk of contracting a severe form of leukaemia the day after her second birthday? Dunno. If she had died then, the world would not have lost anyone of great “value”, she was young and had not achieved anything of “worth” and indeed society would have saved itself an awful lot of money. I hate to think what her treatment cost (btw, thanks to all UK taxpayers reading this, you saved her!) But consider another case of cancer that I am close to. My dear friend T, who contracted cancer about the same time as AJ at the age of 40. Now T really has contributed a lot, he has been enormously successful and brought joy to millions, he is the father to three beautiful children. What if his parents had been told that he had a propensity for cancer?

What do we stand to lose by having these choices available to us? What will we be left with if we attempt to iron out all the anomalies, the differences, the defects? As I said above, the world would be so much poorer without AJ in it. She might not be perfect but she certainly is scrummy.


(Photos courtesy of my aunt Paula once again)

I was going to steer clear of Godwin’s Law, I really was. I was just going to hit Publish again and totter off to bed. But we know where this ends, don’t we? This attempt to create a perfect child?  (I sound a bit like Jonathan Pie) Even if the idyllic eugenics of the early twentieth century that preceded the horrors of the attempt to create a master race later in the century might not be fairly compared to offering  a screening test that gives a pregnant mother choice, we do have reams of dystopian/utopian sci-Fi future fantasies that envisage a world where a perfect being has been created. And none of them end well.

So what’s the solution? …it really is time for bed.
ten top, gold-plated misliterature stars for anyone who can spot the deliberate spooning in of a Bob Dylan snippet in reverence to the great man’s recognition by the Nobel committee. Oh it was the “unborn and unnamed” from Masters of War.

Advocating and educating

So after the Sally Philips led media blitz, this is my new mantra: advocating and educating. I think this blog has always been about making Ava-Jane visible, to begin with, when her life was in the balance, I wanted to make her visible so that, what might have been a fleeting passage on this earth, was remembered. But as she has got better, my blog posts recently seem to have been about life as a parent of and co-habiting with a person with disabilities. I sincerely hope that I have managed to convey that it is a richly rewarding experience, one that we stumbled into unaware and unprepared, but that has enriched us all.

Something that has come up again and again during this media blitz are the interrelated questions of what is the worth of a child with disabilities, what will they contribute to society and how much of a burden will they be on society.

I have often said that we have two children, one who lucked out genetically and one who didn’t. Otto is enormously good looking, caring, charming, able and intelligent, he has just passed his 11+ with flying colours  (I had better get it out there now, that this blog post is really nothing more than a cheap vehicle for me to be able to be “Smug Dad” and broadcast that last fact over the one small loud hailer that I have). So ostensibly being Otto’s parent is easy, he is the kind of kid a prospective parent would want to have. You wouldn’t screen him out. But what’s to say that he doesn’t grow up to be a murderer, an arms manufacturer, a  junkie or a marketing executive? While he is as “normal” as you could want, he might go through life contributing little to society or being an actual burden.

Ava-Jane isn’t going to pass her 11+ and there are a whole load of things that she isn’t going to do but she is unlikely to grow up to be a murderer, an arms manufacturer or a marketing executive but she is going to make a lot of people happy.

So, yes, our lives have undoubtedly been enriched by having Ava-Jane in them and I would argue that Ava-Jane has had a positive influence beyond her immediate friends and family. You can take her to the pub as we did this evening and she has said hello to everyone there.

But if we were to go back in time seven years to be told that our unborn and unnamed baby would have Down’s Syndrome, heart defects, leukaemia and brain damage, would we have chosen to terminate? We wouldn’t have been losing Ava-Jane, we’d have been losing an unknown. So I think the honest answer is that we probably would have done, had we known all of that. And the world would have been without Ava-Jane; a poorer place. img_7538

 

  • ten top, gold-plated misliterature stars for anyone who can spot the deliberate spooning in of a Bob Dylan snippet in reverence to the great man’s recognition by the Nobel committee.

DS Media Blitz

Well, firstly, wow, I have borrowed a new Mac screen, so I am seeing my blog much better and in much higher definition than before. Woof!

But anyway, I digress, before I have even got started. We have been seeing something of a Down’s Syndrome media blitz of late, mostly thanks to the most excellent Sally Philips.

We have had:

Sally’s documentary about living with DS on BBC2 here.

There was a Moral Maze about the screening test for DS here

A conversation between Sally and Dr Tom Shakespeare, massive intellectual (who I went to school with!!), on the Today programme of Radio 4 here (at 8.40 am)

And Sally in conversation with the very funny Frank Skinner here

Apologies to anyone reading this from outside the UK, who can’t access those BBC links, or Mum… I’ll show you tomorrow.

So all of this media blitz is about the NIPT screening programme, which I have been banging on about for a while now. Will a less invasive test lead to more people screening for DS and therefore will more people terminate DS foetuses? And will this lead to a world without DS (as Sally’s programme title asked)? And does this have wider implications beyond the eradication of DS, which some people might find desirable, could this mean the eradication of other “abnormalities”? Phew, I have managed to digest a massively complex debate into just three simplistic questions with relatively few subclauses and brackets. So, like, basically, that’s what it’s all about, everyone keeping up?

But we, in the Down’s Syndrome Community [all caps] love our children and of course could not imagine a life without them. And maybe, as someone hinted at in the programme, the problem isn’t a question of our lives without them but their lives without us. There were parts of Sally’s documentary that seemed to be from the perspective of the parent of a person with DS rather than from the perspective of someone with DS, just as this blog is from the perspective of a parent of someone with DS. But then we heard from a woman with DS from Iceland. She is one of the last people in Iceland with DS because they now have a 100% abortion rate for foetuses with DS in Iceland. This woman has had to speak out, as a person with DS, for her right to exist, for her value as a human person. Fo and I did have a bit of a bet on on who would cry first during this programme, it was a dead heat during this section.

I would certainly never claim to speak for the Down’s Syndrome Community, whatever that might be, but I can only see positives in the advances that mean that a woman can have a non-invasive test about the condition of the foetus she is carrying that informs her in being able to choose whether to carry that pregnancy to term or not. It is a process that is entirely ethically sound but in practice it will mean that there will be no one like AJ to come in the future, but that said, there is actually no one quite like AJ.

I had better bung in a photo of her looking cute at this stage:

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(…with her Daddy)

So my super fab wife has just put this on Facebook:

Choice is not the “be all and end all”. All of the best things in my life have happened because they have happened. Not because of conscious decisions or weighing up the positives or negatives.

It was something that we were talking about this evening, that why I like Aldi: no choice, and referenda have been turning out crap recently (vis Brexit and Colombia): too much choice. And the US election: way too much choice. Sorry I feel I have to elucidate on these analogies. I am not an informed shopper, I get very confused very easily by too much choice. I know I want tomatoes, for example, so when I am presented by an array of big, small, cherry, plum, or beef varieties all of which can be on or off the vine or organic or otherwise, I, as an uninformed shopper, am confused, I just want tomatoes. Conversely, and now I am going to sound exactly like the smug know-it-all, middle class liberal, that everyone is rising up against, “other people” are asked to make a decision about something that they are not very informed about but that they know they want some specific outcome from. So from this now very tortuous analogy for tomatoes read my job back/my country back/the people who did my people wrong to suffer.

A lot of the talk around DS is about finding out about “The News” and how sensitively, or not, it is dealt with. A lot of people have found out that their child had DS days after the birth and overhearing whispers or being told very bluntly by a medic that their child was suffering from DS and their lives would be screwed for ever onwards. In our case, I took one look at AJ and knew she had DS, she has never looked so stereotypically DS since that day. The registrar who came to talk us through it all was massively sympathetic and told us that, yes, she did seem to have lots of the indicators of DS but we wouldn’t actually know for sure until we had completed some tests, I was like, “No, mate she got Down’s Syndrome”. It is quite hard to really remember the emotions of that day, but I think that I was quite comfortable with that. We had been given a warning during pregnancy and so it was on our radar and on our thoughts. And then…

Well, and then… I took AJ to have her heart checked and to be told that basically she didn’t have a heart and since then, through the first heart op, leukaemia, brain damage, another heart op and all sorts of treatments and diagnoses, through all of that, Down’s Syndrome has been the least of our problems.

I was going to take this blog post into a meander into utilitarianism, the worth of a normal child versus an abnormal child, the cost of keeping AJ alive and whether this could be calculated against the value that she brings to her community, but then I realised, that it is getting late and I should be to bed, got a lot on at work. Night, night!

 

Roadtrip to say fare thee well to Uncle Nin

This blog has always incorporated our various roadtrips, becoming a travel blog when we set out for Budapest. This week, AJ and I went on a roadtrip to Devon to my Uncle Ian’s (Nin to us) memorial. We had planned to be going as it was  to be his ninetieth birthday party, but he died mid organising it.

It is very sad to lose him but there does seem to be something wonderful about dying in the middle of organising your ninetieth birthday party, firstly you have reached ninety and you have reached ninety with enough of your wits about you to be organising a party and you know enough people to be able to organise a party. There is such a thing as a good death.

So I raise my cap to one of the wittiest and wisest people I have known. Nin was a vicar and while I am an atheist, he was the kind of vicar that makes the Church of England make sense: an important member of the community who supported a wide cross section of his parish. I used to take my pony to the Riding for the Disabled camps he ran. And given the fact that I am now the father of a disabled person, I really treasure the way he gave me the opportunity to spend time with people who were “different” from me, something that I have often said is important in the way AJ belongs to a community.

My memories of Nin will always be of someone who could really make me laugh. He played on his fat parson personage and being the Reverend Ian Graham-Orlebar to gently take the p***. One elaborate joke he played, which has a timely relevance, was when the UK first joined the EU, EEC as it was then. He managed to convince his parishioners at a series of specially convened parish meetings that on accession, the UK would have to adopt all sorts of European-friendly directives, such as the 10-day week, the 10-hour day, he adapted a clock to show them how it would look; driving on the right and reversing all highway code regulations, so one would drive straight over round-abouts. He managed to get himself in the local paper when a newshound had heard that his ducks were eating the rockery “Oh, yes,” said Nin, “You should see their powerful bills working through it.”  Obviously the ducks were just nibbling the flowers.

Nin pictures: courtesy of Aunt Paula. Nin feeling the pressures of his calling, with my mother, my brother and Linda his companion for many years. 

So Ava-Jane and I set off on our roadtrip to say farewell to a fine fellow for a life well lived.

 

Roadtrip pictures: AJ being pulled by Freddie in her chariot, on the bounce-bounce-bounce with Lila and some heavy static and a swing full of Great-nieces. Then back for a cuddle with Otto, fresh home from some Alpine mountaineering. 

AJ makes a great travelling companion on some levels… On the sort of giggling at your jokes, charming everyone you see, sorts of levels. But it would be a lie to say that it is easy. There are all sorts of wheelchair access issues that are impossible to predict. Our first stop was with my very dear old mate, Ed, wife Lexie, god-daughter Lila and her two bothers. They live in a wonderfully higgledy-piggledy house, but when you have a higgle or even a piggle, you have a wheelchair obstacle. We faced the same challenges when we got to my Uncle’s house. He had a famously beautiful garden on a slope with little pathways. AJ, and her cousins Guin and Nora, attempted a little walk but didn’t very far.

These sorts of things are inevitable but we are getting an interesting look into the life of someone in a wheelchair. It’s not that people aren’t massively helpful, they are, AJ just has to give someone one of her grins and they would go out of their way to do anything. In St Malo, we decided to take a stroll along the ramparts, we had made it pretty much the whole way round when I realised that the way we had come up was the only access point that didn’t involve a spiral staircase. But a friendly French gendarme helped me carry her down one of these spiral staircase, no mean feat! So it’s not that people won’t go out of their way, it’s the feeling that you are asking them to go out of their way. Obviously I am only experiencing it vicariously and it is hard to judge how AJ feels about always needing help. But even just from our point of view it can be difficult.

The worst experience we had was at the hotel in St Malo, that had adveritsed itself as having wheelchair accesible rooms. What they hadn’t mentioned was that the wheelchair accessible rooms were accessed via a very non-wheelchair accessible lift. It was one of those moments where you felt you had to apologise for having a disabled child, which is bollocks. I was very understanding with the guy when he told me about how they couldn’t have wider lifts because they couldn’t damage the architectural patrimony of St Malo (bombed to shit at very end of WWII, so current version is a reconstruction, but anyway…). That’s all well and good, I told him, I would, Monsieur, be the very last person to want to damage even a hair on the chin of the oh so precious architectural patrimony of the historical city of St Malo. And while you may insist, mon ami, that you have had wheelchairs in your bijou little lift, I would counter, mon choux that they would have had the hips of Mick Jagger and a wheelchair that was little more than a sling, given that I could barely get our wheelchair into said lift when folded and crucially, without the habitual occupant occupying it. Je comprend completely my old mucker, but why the bloody hell do you tell everyone that your chic little hotel is “wheelchair accessible”? It’s enough to make you want to Brexit!! Oh, doh!

Anyway, we had a special bit of family time down in Devon. Four of Nin’s great-nieces, including Yasmin, from Brazil all gathered together with their Grannies Paula and Pipsie.

So Nin, thanks to you, the person who christened me and married me. My world will be that much emptier without your presence in it.

 

Walkin’ n’ swimmin’

  
    
 

So we’re on holiday. Just the four of us, no carers nor nothin’. This was slightly at my insistence, it does me a lot more hard work for me and Fo and Otto too but with all the whirlwinds that generally surround us, I love the idea of the four us being together and hanging out. After much umming and aahing, humming and haahing, Europe or further afield, Fo and Otto wanted to go to Morocco, I felt it was a bit risky in the current climate (we’re in France, say no more)? Isolated Gite or massive Eurocamp? Plane or car (AJ has never been in a plane and we’re going to Sri Lanka at Christmas, so some practice could’ve been good but we have recently acquired a WAV, Wheelchair Accesible Vehicle, since you ask and getting around is so much easier these days)? So we find ourselves in a cabin on a small site near the Loire and it is absolutely perfect. As ever, all organising credits go to Fo.

But for me, spending this kind of time with AJ allows me to see the kinds of things I miss in the hurly burly of our everyday lives. The best has been the fact that she can swim! This was a bit of a surprise even for Fo, she went for a session at the end of term and they showed her some techniques. And where, previously, “swimming” with AJ basically meant holding her in the pool, she can now get places. Sure it isn’t very far and yes she does end up swallowing half the pool and after a few strokes begins to list perilously to the right but she is undoubtedly swimming. And for AJ to move even a couple of metres under her own is a massive achievement and she knows it and she loves it. See the photos above, admittedly they are quite heavily cropped so you can’t see that one or both of us are within grabbing distance but they do shows that she is bobbing independently.

(BTW this post is going to be edited even more badly than most, I am not sure whether it isbecause my poor old iPad is dying on its knees or the campsite’s wifi connection but there is a massive lag between my typing and the system catches up so if I type a sentence the iPad looks like a pianola in an old Western movie with the keys playing themselves and the words appearing on the screen like ticker tape. And I can’t go back and make a correction without deleting everything that preceded it. So the pedants amongst you (and Toby GS) will have to forgive me, what’s done is done.)

Then there’s the walking. Fo insisted that we take AJ’s walker with us. We have this at home and to be honest we don’t use it as often as we should. It’s a hassle to get her into it, inside she bumps in to the furniture and outside, it’s either raining at the time so no fun or she gets bogged down in the recently rained on grass. And while the WAV is a sizeable vehicle trying to fit in the walker alongside everything else we had to pack and remembering to leave a wine-sized gap for the wine on the return leg, seemed a tall order. As you can see in the photos, it is quite a big bit of kit. My big brother was around and while his heroic saving of Stacey, their family SUV, cruelly abandoned by son Izaac in the Australian outback, is a story for another day and has been well documented across other social media channels, he does know all about the larger-than-car-sized vehicle category and its storage capacity. So the Baxter boys had good look at the layout of the seating, realised that any major realignment was well beyond their technical capabilities and plonked the walker haphazardly on the rear passenger seat. Fo nixed this plan and slotted the walker neatly behind AJ in what is, well… the obvious place to put it. 

And it is great ha t we have got it with us because, again, it is an expression of her independence. I was taking the bins out and she came hurtling down the hill towards me with Fo and Otto in hot pursuit and then went off across some open grass to have a race with Otto. She is pretty happy most of the time but the absolutely delight that this gives her is a beautiful thing. 

I post this blog on Facebook and the dreaded FB keeps presenting you with your memories from one , three, five years ago. I started this blog five years ago when AJ was diagnosed with leukaemia the day after her second birthday and those memories keep popping up when her life was in the balance. Then  we went to Budapest three years ago to see if there was any chance of her being able to recuperate any mobility at all and it took three people to make her take one step. Even a year ago imagining her swimming would have seemed wildly optimistic. So here we are, swimmin’ n’ walkin’. Fab!

And, yes, those appalling apostrophised gerunds are a reference to that truly dreadful Referendum ad attempting to get out the youf vote. Hundreds mown down on Bastille day, priests getting their throats cut and we think that France has got nothing better to worry about other than when we deign to trigger Article 50, well that was a lot of time and effort well spent. 

Ava-Jane turns seven and Referendum-de-dum-de-dum

Today is Ava-Jane’s seventh birthday. And as this is a blog about her, it is a milestone that needs to be acknowledged. And while events engulf us, it is good to be able to recognise these kinds of things. So here’s a picture of the big girl, sorting her candles.

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Ain’t she cute and all that… But I have always allowed myself to stray into political things in this blog over the years and we are living through truly seismic political times. I had started writing a post about the referendum the night before it took place. I’ll put what I had written in italics below. Essentially I was trying to articulate the fear I felt, as Ava-Jane’s father, for the kind of disruption the referendum could unleash. I was writing about the fragility of a lot of the structures we rely on across so many elements of our society.

I was really, truly afraid of what the referendum campaign had already done in terms of awakening some very ugly emotions. And I was terrified of what a ‘Leave’ vote would mean. It seemed inconceivable that risking the kind of damage that leaving would do to our economy, our politics and the fabric of our society in order to regain some fabled “sovereignty” or being able to decide the fate of “our” lives. The pack of lies that we were sold has been exposed over and over again by people who can write about it far more coherently than me. So, there is no need for me to pick over it again.

But the impact of what this leave vote means is already apparent to see. The economy is all over the place, just at a time when we were supposedly coming out of the worst recession we have seen for at least a generation. Politics… Where the fuck do you start? Worst of all, there seems to have been a rising of some deeply unpleasant tendencies. This is a revolution and we have no idea of where we are going.

I saw a headline for an article, saying that revolutions eat theirown. Revolutions are ugly and they rarely seem to deliver what the people that initiated them thought they were revolting for. And they do eat their own: Caesar, Robespierre, Trotsky. But what the hell were our own revolutionaries fighting for? What will we have gained from this almighty mess that sits before us?

It is hard to lump together the lies, half-truths and fantasies that the Leave campaign peddled that seemed to chime with 52% of the people who voted. What were they voting for? I see it as desire to return an imagined moment when Britain was “great” and jobs were plentiful. When things are hard, it is common to hark back to some national idyll and to blame “others” for having robbed you of it.

Of course it hard to see history from the perspective of others, but when Britain was great it was great thanks to having built the biggest, protectionist, single market that the world has ever seen. It felt great to us because we set the rules. We were preaching “free trade” when what that meant was that the Empire should have free access to the markets of the world as a bloc, but India or Nigeria could not trade freely with their own neighbours. So, sure we can be great again but it might entail getting ourselves an Empire again, starting with Malaya/Malaysia and working our way backwards.

Immigration eventually seems to have been the issue that turned the vote. Sitting from my rural retreat, living in a village that does not have any immigrants of any type as far as I know, it would be facile to say that immigration is not a problem because it is not a problem for me.  Though actually, it does seem that immigration is a hotter topic in places with fewer immigrants than more multicultural places.The obvious example being London, which voted strongly in favour of Remain. What’s that about? On a very anecdotal level I heard of someone who thought that if we got rid of a load of immigrants, we could get the lazy-arse Brits off their couches in Birmingham and into the fields of Lincolnshire to pick potatoes. So it’s not so much a case of “them” coming over here and taking “our” jobs, it’s really “them” taking “their” jobs.

Listening to Grove talking about spending on “our” NHS is just unbearable, anyone who has spent any time in the NHS, knows that “our” NHS is utterly dependent on “them”. And the NHS is all the proof you need that immigration has very little to do with the EU. From the doctors, through all the nursing staff, to the cleaners, there is a mix of Brits, EU, non-EU. We have stolen medical staff from all around the world and we complain that “they” are straining “our” services (I am getting a little tired of having to put apostrophes round “us/our” they/their”, I hope I have made the point!)

Though ironically, if we really want to solve the question of immigration, we might have taken an important step, by tanking the economy, we may have made UK plc that much less attractive a destination and thanks to the market forces that the likes of Gove doff their caps to, we will see far fewer immigrants coming over here and bolstering our economy. Because that is what they do, particularly the kind of immigrants that come here from the EU. They bolster our economy.

In the office block where I work, there is company that compiles reports about press reports on companies internationally. So they employ a lot of Europeans. I smoke with a lot of them, they are young, healthy (apart from the smoking), single, childless, pay taxes. They will probably be here for a few years and then go back to their own countries, having gained some valuable experience and made themselves more employable. They will go back to their own countries to have children, grow old and be unhealthy. I see a lot of myself in them as that is exactly what I did. So they are not going to be a drain on our resources, precisely the opposite, I am. The truth of the matter is that my generation needs a load of young people to come over here to pay taxes to give me access to “our” (I can’ stop myself) NHS free at the point of delivery.

And that should bring us back to Ava-Jane. I have often said that her existence is proof how our taxation system makes us the civilisation that we are. I find it truly awe-inspiring that we live in a society that has invested so heavily in maintaining the life of someone who on many measures will contribute so little. She is alive thanks to the NHS.

Again, I think others have written far better than I could about how much of a fallacy it is to say that the small amount of cash we might be able to recoup from the money we send to the EU could be reinvested in the NHS. The NHS is already massively underfunded and what we need is a proper tax base to pay for it. By leaving the EU we will not only be losing people who pay taxes to fund the NHS, we will also be losing the people who staff it. So good luck Govey seeing if the net amount we get back from the EU according to you covers all of that.

Oh, gosh, this really has become a bit of rant. The thing is that I have been completely incapable of talking about any of this with anyone. I had been quite vociferous on Facebook and socially pre the referendum, but now I am completely speechless. I basically want to swear a lot and that does not seem the best way forward.

I just cannot see any good way out of this. Obviously I think Brexit is a complete calamity and I would love to think that there was some way that, having glimpsed the abyss, we could step back from it. But I think that the referendum, as a process, has given voice to some basic discontent that it will be very difficult to assuage. People have channelled all their frustrations into a rage against the EU. We’ve seen that all the expert opinions saying that a Leave vote would not mean that you would be any richer, or that  your community would not suddenly become more like “you” were utterly disregarded. But the referendum has made people feel that their voice had a power that it hadn’t had before.

It feels like almost any next step the political class take will be interpreted as a betrayal. Triggering Article 50 and then fudging some negotiation and ending up like Norway and having to allow free movement of people?  A second referendum? A general election that elected a “No Article 50” party, e.g. the Labour Party and we never Brexit?

I can’t see any of those options ending up with anything other than blood on the streets. So do we just take it? Do we just accept that our country has just become a smaller, angrier place that is less able to look after us?

And that’s why I haven’t been speaking or writing about this because I have absolutely no idea of what we should be doing or thinking. I am just worried and I am worried for my little girly who needs so much looking after and does not need an uncertain world.

 

I really shouldn’t, I really, really shouldn’t… This is a blog about my daughter, Ava-Jane and her trials and tribulations, so I should not be using it as any sort of platform to rant about my political preferences.

But sod it! This is too important for niceties and anyway I think that the decision that is taken tomorrow will have an impact on the lives of all her generation but particularly someone as vulnerable as she is. So I will try to relate this post back to her is some tenuous way.

Being Ava-Jane’s father always makes me feel very sharply the precariousness of the world we live in. She relies so heavily not only on the support of the state but also on the strength of the community around us, from family, to the village, to our friends and it frightens me when I see these structures under threat. These structures are fragile, they might, in normal times feel immovable and constant but they aren’t.

This week, Ava-Jane had a waking EEG. This meant that she went to the hospital on Monday and had a lot of electrodes stuck to her head with very powerful glue. We had a red button, which we had to click the  every time she had a spasm. All this was recorded in a black box in a bag that went back to the hospital for analysis. Some boffins will pore over the graphs that the black box spits out and see what was happening on the graphs when we were clicking the button, check those against our notes of what she was doing at the time and hopefully come up with some conclusion as to what is going on in her brain.

All that is just an amazing process laid on by the state that we live in, from the boffins to the doctors, to the nurse who had the unenviable task of having to try to unpick the electrodes from the glue. But also the teachers who presumably took it in their stride having a droid in their class and the woman who accompanies AJ in her taxi to school who had to make sure AJ was distracted enough not to try to pick the stickers off.

Here’s a picture:

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And apart from all of this state sponsored support, there are all the people around us, Mum being there to occupy AJ (she is out of pic in the photo above, running Doll’s tea), our lovely Finnish workaway, Amanda or having a boss who understands when I need to run off for another AJ emergency.

I have written before about the part AJ plays in our village community and how she brings out the best in people. We had the village sports day a few days ago and again, the most excellent bunch of big girls swooped on her, took her off me and entered her for as many races as they could. They gave her some intensive egg and spoon holding coaching and pushed her into the medal positions in overall standings. I missed seeing Otto enter her in the hurdles, I couldn’t quite see how that would have worked but otto explained that it was quite easy to barge the hurdles over with her chair and they came in second.

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So I feel  incredibly privileged to live in a society that can provide all of that. But I am a bit of a natural worrier and I do worry that this is all quite fragile. Things do fall apart. It is a very rare and privileged society that we have built for ourselves here and now. But it is not a society that has existed in other times and other places. I don’t think there is anything uniquely British or even Western about finding ourselves where we are today.