Friday, 30 April 2010

It's The Last Day of April.....

That means it is the last day of Autism Awareness Month. Well, I wonder just how many more people are aware of autism on the 30th April than there were aware on the April fools day?  Sad to say that here in Great Britain it is probably very few since the whole of the media has turned itself over to politics and the general election.

There have been a few documentaries on TV around the subject of autism, but unless you already had an interest in the subject you probably wouldn't bother and quickly seek out the channel with the most entertaining film, drama, crime series, sci fi show or whatever to watch, or in my case, to go to sleep to!  There has been the odd reference to autism on the radio, but they seem to be in passing and not really anything to do with autism awareness month. It's politics all the way.

I had considered posting a blog specifically on the advantages of an autism awareness month but it occurred to me that I would only be talking to people who are already aware, so not much point really, especially as, as I mentioned earlier, there is a general election in the offing and that is taking up a hell of of lot of time and space!

Those who have strayed into these posts before will know that I am a socialist, I know that is a bit out of style and possibly offensive to some, so I've toned it down a bit and joined the Labour Party. No, really, I have, I've got a membership card and everything.  There are two main reasons for nailing my colours to the mast..

Firstly we live in a part of the South Wales Valleys decimated by Margaret Thatcher in the 80's. Whole communities destroyed in her dream of 'No society'. One can't help wondering what the thinking is behind Cameron's 'Big society',  I've got a sinking feeling that that they are just different faces  on the same coin, and the coin will end up in the pockets of the already prosperous leaving the people at the bottom and in most need with even less. Which leads to my second reason..

The NHS and Social Services. Social care. We all know we are facing cuts in services whoever is in charge because there is global financial upheaval due to the greed and total disregard of anyone but themselves by international financiers and bankers, who if they know of the existence of the NHS and Social Services would probably not understand its importance or approve. They rake in their bonuses and don't give a second thought to anyone but themselves, people with obscene amounts of money will not be affected by government cuts. The people who will be affected are those who depend upon the NHS and Social Services, not only for the services they provide, but there will be inevitable job losses, and there begins an ever decreasing circle.

Ok, enough to say I have a personal axe to grind, we had a small craft business that went to the wall during the last tory government, but it wasn't their fault our first daughter was born in 1985 with autism.
We effectively gave up everything for her, moving to South Wales because a more compassionate political climate in education there meant she did not have to go into a residential school at the age of 5, and her education and welfare could not have been any better served, and we managed to keep her at home and not loose her to an institution, which, by the way, would have almost certainly happened in the tory heartland we were living in when she was diagnosed.

Back to autism awareness, how unfortunate that an election was called right now. This whole month has been dominated by politics and all the bluster that goes with it. I have been seeing things about autism from all the usual suspects on line, lots of stuff on twitter and facebook, I'm ashamed to say I've hardly looked at it, I've been too busy dealing with autism at the coal face so to speak, the first half of this month was a bit dodgy, but glad to report that the last week has been amazing. A fortnight ago we had screaming and violent tantrums, this week we are discussing the size of her fathers belly and what we should do to reduce it, that colouring by number books are pretty cool  and the relative merits of decent coloured pencils as opposed to felt tips. She has also confirmed that homemade fishcakes are better than the ones you buy in Asda (Oh yes! I'm good!). She also just indicated to us that she is very fond of the Scaramouche part of the Bohemian Rhapsody, strange girl.

So I'm aware of autism, so are you if you are reading this, all the politicians I've been sending emails to about Autism Awareness, Stand up For Autism and the Don't Write Me Off campaign who have bothered to respond say they are aware, after the ear splitting screams Sarah was practicing last week, most of our neighbourhood are aware! Even our dog is aware, although if it's possible, I suspect she's somewhere on the spectrum too!

My apologies to anyone who is opposed to my political views, but they are my views and this is my blog, so I'm allowed to say Vote Labour if you want a better chance of hanging on to the social care system that we have in place, if the tories get their hands on it the chances are it will be destroyed, and if you are at all aware of autism you will know how vital social care is.

On a lighter note, this has just been brought to my attention, are you aware that we have Star Trek day to look forward to before the election...May the 4th be with you..... and don't forget to go and vote on the 6th, women threw themselves under horses to get the vote, now that's what you call activism, we could do with a few more Pankhurst types standing up for Autism Awareness!

Friday, 9 April 2010

A Little Bit Of Give And Take...

Feel like I should really say something about the current debacle around a mother of a 5 year old with Downs who found jokes about people with Downs Syndrome and their parents or carers or whatever the politically correct title is for the family and friends of said folks, to much to take and was brave enough to stand up and say what she thought.  I can't begin to say how much I felt for her when I read her blog:  I live for glitter: Well that was rather unexpected  I could give you a list of similar occurrences a mile long that I have encountered over the last 24 years of trying to make life for my daughter and my family as 'normal' as possible. It's all a matter of give and take.

Jokes about disability and difference are commonplace, they are a defense against fear and ignorance, or maybe I've just developed a thick skin. I've been watching the argument raging on twitter. Don't get front row tickets to see an edgy comedian if you are not prepared to be ridiculed, got to admit that was my first thought. My second thought was that she wasn't expecting to actually find herself confronted by comments that hit home as personal and offensive and why should she?  she has paid to be entertained, not to be insulted. Back to give and take.

I remember an occasion several years ago now, when some inarticulate young 'chav' girls started pointing and laughing at my daughter while we were waiting in a bus station one evening. They seemed to take exception to her shoes, Rocket Dogs, very trendy at the time, but a trend that had not quite reached Aberdare. Fortunately our bus arrived and Sarah was oblivious to the attempted ridicule. My blood was boiling and if I had had some support to call on I would have turned the tables and ridiculed them. That particular year was a bad one for fashion in Aberdare, awful hair, mostly peroxide, pulled back way too tight in a 'council estate face lift', tramp stamp tattooed on the lower back and a grubby thong emerging from Primark joggers (usually grey with pink piping, see how observant I am!), vacant expression on the face, mouth permanently open, looking as if they have more special needs than my autistic daughter.  But let's face it, you still see the odd shell suit out and about in Aberdare and I am still struggling with the concept of bare midriff and pants cut so low you have to keep pulling them up and ridiculously small bomber jackets in the middle of winter, don't these idiots feel the cold? Oh, sorry, was I a bit harsh there? Give and take, give and take.

Since my little girl has been grown up and we go to grown up venues and events we generally only encounter  the odd 'funny' look, mainly because people tend to approach Sarah first. In restaurants for instance, who in their right mind is going to talk to the middle aged old biddy when there is an attractive blonde to talk to? Most people cotton on fairly quickly so there is no issue. Give and take in action.

I've spoken here before about the service users monthly disco: Dealing With The Day: Ah, It's The 1st Wednesday Of The Month, That Means Disco.  An event that would confound and confuse the sensibilities of any number of edgy comedians. I do believe I made some sharp remarks about the style sensibilities of some of the residents of Aberdare, and in particular the bus station users in that post as well!  Being the subject of a bad joke isn't very nice for anyone and I'm pretty sure the good people of Aberdare will be seeking me out and chucking eggs at my windows for thinking their fashion sense is a bit off. But then the sharing of a silly moment or event is an amazingly positive experience. More give and take.

In my twitter bio I say that living with autism is a bit like being in a Monty Python sketch only more surreal. I stand by that. Without comedy what would we have to laugh at? Rhetorical question of course, but I guess you have to choose your comedians with care, knowing how ascorbic comedy can be these days, if I was feeling a bit vulnerable I wouldn't choose the likes of Frankie Boyle. On the other hand, one of the most memorable evenings of my life was spent aching with laughter at the far from politically correct Mighty Boosh live in Cardiff. A bit more give and take.

So, to conclude, (you'll be pleased to hear). The lady who was offended by the bad jokes about Downs Syndrome, the people who have it and the people who care for them, has every right to be offended and to say she is offended,  and I would doubt that Frankie Boyle has ever spent any time with with anyone with Downs or bothered to get past the speech impediments he should be grateful he hasn't got, since he probably wouldn't be earning the money he is now by using his voice to ridicule them. I would love to invite him to our little service users disco to experience the fun and laughter that is generated by the very lively bunch of young (and not so young, actually) people with all manner of differences from what is considered normal. We are all just trying to live our lives as well as we can, and I guess that those who have limited or no contact with disability will probably never understand how that disability becomes your life and almost everything you are. This is where give and take changes its meaning,  you are given a disability to deal with and your life as you knew it is taken away.  So, lady who lives for glitter and is a Mika fan, you have my empathy, my admiration and my best wishes for you and your family. Frankie Boyle, this isn't going to make a blind bit of difference to you is it, you just touched a nerve and it hit the internet, if I had any I'd put money on you performing to packed houses for the rest of your tour.  Give and take is the key, what are you going to do about it? If you live with a disability you have to be prepared to be singled out for ridicule, you are supposed to be weak and defenseless, so deal with it. If you like to make bad taste jokes about disability, if you must, go for it, you are hard enough to take a bit of criticism, you're a professional. A little bit of give and take is all it needs.