'ONE MILLION FOR DISABILITY' CAMPAIGN

‘One Million for Disability’ Campaign

The ‘One Million for Disability’ Signature campaign aims to collect at least 1 million European citizens' signatures to combat discrimination in all aspects of the lives of disabled people in Europe. The European Union must respond to the call of at least 1 million. The campaign ‘One million for Disability’ runs to 3 October 2007 and on 4 October 2007 the signatures will be handed over to the European Commission and the European Parliament. At the same time, a gathering of disabled persons, their families, friends and allies will take place in Brussels. To show your support visit www.1million4disability.eu or look at link on my sidebar.

le cinema sheila

I love French 60s ye-ye pop. I think this video is so funny. Watch the chap on the left behind Sheila. He's so full of 'showtime' he looks as if his head will fall off. Talk about enthusiastic !

The Party's Over --- thank the Lord !

Well the birthday's done and the party's over. It was a really good 'bash' in the village hall with lots and lots of girlie stuff and now we're all shattered, but the presents were enjoyed --including the monkey who has yet to be finally named but it's a toss up between ToeJam, Derek, Custard or Measles at the moment.



Now I must retire to a quiet corner under a table with jelly and cake matted in my hair like everyone else here. Yaaaaaaaaaaawn zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.............................................

A little levity today

This is the sock monkey I made for my daughter's birthday. It's the first one I've ever made and I'm quite pleased with it

Mourning a bygone age

Yesterday we went with the kids to a Wood Fair --- set in a big Country Park with lots of stalls selling wood-related stuff and jugglers, sculpture, painting etc etc.

In this part of Suffolk and Essex there was always a tradition of real hippy fairs in the 70s and 80s. There was Rougham Tree Fair, the Rainbow Fair in Deham Vale and others too and we always went. There was still the essence of 60s hippydom around with lots of little children running naked, long hair, the smell of dope in the air, wierd dancing, funky old vans and coaches painted in lurid colours and patterns, dogs running about and food stalls where everything seemed to contain beans and onions, soya or dates.

What was interesting yesterday was that this event was based on that model. Indeed the organiser, who is well known in these-here parts, has been a part of this Fair tradition for nearly as long as the Green Man himself has been about. Except, except it's all been tidied up and cleaned up and commercialised and refined. Now, there are still caravans in bright colours but they're professionally restored gypsy 'caras' and the people 'living' in them seem to be playing a role rather than being who they are. (They actually just stay in them while you're there and go in their Motor Homes for the night and then return to a proper house when the event is over). There are still stalls but instead of freely creative, unusual stuff there's 'nice' garden furniture at incredible prices. There were wonderful scupltures for anyone to enjoy but only two and the rest were for sale from £250 up.

Even the food caters more for the 'new' visitors who come now. They arrived in 4x4s, Land Rovers, Audis and some came with lovely Cath Kidson picnic sets and Lakeland accessories. Instead of mung bean stew, alfalfa on rye , there's a selection of 'scrummy' cakes made from organic ingredients that look like something from a Delia or Jane Asher shoot and each slice is £3 or more.

I'm probably old and grumpy, cynical and jaded but the refining of the original events seems sad to me. The air of freedom and spontaneity has gone. The feeling of sharing and companionship and people being themselves has gone. Instead we're left with a dumbed down version of the past where the sole reason is to make money and to tailor the whole thing so it cannot be offensive to anyone. Although it was a lovely day, lovely weather, lovely setting it was all homogenised and I could have been at any other lovely event: rather like the way that every town centre now looks the same and any originality or flair has been ironed out.

Children

GOD’S SOUL

They are children playing
They are pretty celestial flowers,
They are life, they are enchantment,
They are the light that illuminates the terrestrials,
They are the peace, they are the joy,
They are the world that nobody stole,
They are the soul of a King,
Whom all human beings love.


I found these words on the blog of David Santos who is portugese. I believe they are translated from his own language.

The words convey what I feel about my children much better than any words I could write. I'm not sure if David wrote them or not.

Poignantly they are directly below a picture of Madeliene who is lost in Portugal.

Turning a corner

I've mentioned before that our eldest child is disabled. He has a variety of disabilities that affect his sight, mobility and he has learning disabilities too. All in all he is a lovely boy (and this opinion is not just my own bias) who has amazed us with his tenacity and positive outlook.

Yesterday I had a real peek through a new window. When he was born the outlook was very gloomy. Apart from the acute shock of our first born being disabled, there was a great deal of mystery about what exactly was wrong with him and why this had happened. There had been absolutely no warning during the pregnancy. The first few months were a blur of travel to this hospital, that consultant, this clinic, that 'Team'. Though we were both strong for him and for each other, for nearly three years I couldn't talk about the actual birth without breaking down in tears. The fact that both partner and I had worked with people with learning disabilities somehow made it all worse and better; worse because we knew (or thought we did) the reality of raising a disabled child and all the difficulties that brings and better because we knew the system and knew the ropes and, boy, does that make a difference. I cannot imagine what it must be like to suddenly deliver a disabled child and have no experience of that world at all.

Occasionally we would receive comments from well-meaning nurses and doctors about how our professional experience meant we'd be OK but this was different. This wasn't work. We couldn't pack up and walk away at 5.pm. and go home. This was our life and our baby's life. Our professional experience, in that sense made no difference at all

The details of all the ins and outs of bringing up our son may be for another time, but last night I collected him from his regular Monday Youth Club and suddenly I saw we had turned a corner. There he was, spinning the decks in the 'disco room' and coming out the booth to dance round with his friends, having a sneaky kiss from his current girlfriend. He was happy. He was healthy, accepted, had friends and was confident. He was contributing to that circle of people and part of a community. He was wanted and appreciated. Suddenly, for a moment, all the hard work came together and all the concerns for his future evaporated and he was just a young boy enjoying himself with no self-conscious dilemmas or fears.

I'll treasure that moment as I treasure all the others in his sweet life. Despite all the cliches he really is a gift to us and is very precious.

Another Chapter

Time moves so quickly sometimes. It only seems yesterday that our daughter was born. She'll actually be 9 in two weeks time.

This morning heralded the momentous occasion of her very first time away from home: her class are off for a three day adventure trip and she's so excited she could almost burst. Saying goodbye was hard. She was fine but some of the other children and parents were very shaky. The shakiest was the little 'roughty toughty' boy of the class who clung onto his teddy and onto his Mum and who was desperate not to leave.The other quaking wreck was a very tough looking Dad who was in tears as his daughter got on the coach. We've watched all these children grow together since some of them were at nursery together so there was a real feeling of solidarity in the face of loss --and it was a kind of loss: the start of cutting the ties, the beginning of a loss of innocence, dependence. All good stuff but difficult --- as change often is.

This trip marks the next stage in our daughter's life: first time away from home; new school in September (we have a three tier system here). Gradually you can feel her slipping away and you know you have to let her go and encourage her to fly. I hope when the reality dawns that we aren't there tonight to tuck her in and kiss her goodnight that she copes with any yearning ache for her Mum and Dad.

All this reminds me of my first time away. I was not much older than she is now and our school invited children to go on an 'educational cruise' to Norway and Sweden for 10 days. No opportunity for Mum and Dad to come and retrieve you if it all went badly wrong and you couldn't cope. No mobiles in 1967 ---- just an old troop ship that had been converted into a sort of floating school, manned by cooks from Ceylon who spoke no English and made lemonade from yellow powder and jugs of water. Always there was a strange smell of oranges and boiling potatoes from the kitchen. In the 'ballroom' there was a beaten up old upright piano with some child hammering away at 'Chopsticks' or a boy with a withered arm whose party piece was 'Roses of Picardie' sung in a piercing nasal tone. Even now I can't hear that song without a longing for home.

The cruise was fine. I can still remember the boy who used to howl every night for his Mum, his 'sissa' and banana sandwiches; the two girls from another school who always came to the disco ( Monkees, Beatles, Procul Harem, Spencer Davis, Lulu) in identical outfits --- different every occasion; the Force 8 gale on the last day and on the way home. It was terrifying and exhilarating at the same time and the smell of oranges and potatoes mixed with the whiff of 100 children vomiting into the salty air. ('Have this glass of water and a Carr's biscuit,dear. You'll feel much better')

But I also remember the warm

welcome the people of Bergen and

Oslo gave us --these little 10 year olds invading their shops. Even then, 20 years after, they still mentioned the war and seemed to have soft spot for the English. I remember the amazing sculpture park in Oslo and the church in Bergen.

I hope my little girl copes with this important stage in her life and, 40 years on,remembers what fun she had.

Sorry !

Oh dear, I feel almost ashamed of my last post: what a rant ! The frustration was bubbling over but I'm calmer now. Finally I got to make some work and immediately I felt better. Sometimes I forget how good it feels and how much good it does me to just escape to my studio and be creative again. In the early years of this blessed illness I used to try and then feel so ill I'd have to give up.....and eventually I did give up and the studio became a dusty dumping ground for all the junk we didn't want in the house.


Somehow I have slipped again into the role of keeping the many home-based things going and forgetting myself. It was ever thus........my whole life has been a struggle between doing what I want and feeling a terrible need to look after other people first: to put their needs before my own. Even the decision to go into Disability Arts was partly because I could assuage the guilt I felt at being so indulgent as to 'just make art'. The decision was financial too but was still grounded in guilt. Now I am in a position where I can't work anyway and have more time to 'just make art' and still don't because it feels easier to do the house stuff.


Amanda has some wry observations on the discussions that have been going on here and elsewhere (RTS) about managing creativity and a chronic condition and in the end it is all balance. It's no good turning into a professional sufferer (how insufferable) but about making time to go out and enjoy whatever and whenever we can. Amanda gets out and about and maintains her place on her course, RTS goes gallivanting at the Brighton Festival. I even went gallivanting myself this weekend and braved the repercussions by taking my daughter to her arts workshop in the gallery at the nearby Big Town. Usually I avoid it because it's so tiring but Saturday was a 's** it' day so I went anyway and thoroughly enjoyed the pottering round and people-watching I could achieve whilst daughter was making collages based around the new exhibition.


Some of the courage to do this ( and the courage to resurrect the blog) is down to the examples of other PWME who get on and do. Thank you to all of you for inspiring me to have more courage and more self assertion. I must go now and continue with my painting.................

Caught in a web

I do believe there's something in the air about PWME, creativity and frustration. First 'Reading the Signs' regrets all the time she can't get out of her head: as in ~~~ being consumed by that delicious companion 'the new idea', the project, the things you're really excited about so that it lives with you, inside you beside you. Then Amanda bemoans the fact that '..... being low on energy .....I find myself flitting from one project to the next, doing easy things, trying different techniques instead of concentrating and making real decisions that need to be made.' And then there's little me sitting here in a rage, wasting energy on being cross, wasting time by bloody writing about being cross but only able to sit here because I'm so damned tired today.

Weeks ago I was asked to make somethinng to celebrate a relative's wedding anniversary. I'm happy to do it, Want to do it. It has taken weeks to form the ideas ( in dribs and drabs) and weeks to acquire the necessary materials ( I'm into assemblage at the moment and I have had to trail about looking here and there and everywhere for the objects I see in my imagination).

I have less than two weeks to get this piece finished and now I'm so tired I can hardly muster the energy to sit and drink a cup of tea. And why am I so tired you ask ? Well, because there was a constant stream of people here all Friday and all over the weekend ---friends of ours, friends of the kids and they wanted feeding and amusing and good conversation. They expect me to be witty and jolly and somehow, virtually however I'm feeling, I turn it on as best I can --- so that I don't have to show how I really am. The aftermath is that everyone goes back to work, back to school and I'm left with the clearing up: not because partner doesn't share the burden, not because I cannot or do not delegate but just because they have other stuff to do --- earning money, learning, playing, socialising, making decisions and I am here. Here. Always here.

I know I should ignore it. I know I should postpone it. BUT I cannot work on anything unless the place is reasonably (and yes I do mean reasonably) clean and tidy ---- the kids are fed and have clean clothes, the dog is happy (he's not well at the moment), and the place is straight.

It's a fault, a stupidity but I just cannot help it. I have to know that everyone is looked after before I can indulge my creativity. I once said to my GP that I know I'm daft because I am always giving my energy away to other people. He looked completely mystified. He hadn't the faintest idea what I meant. Of course he does it every day in helping people to get well but he's paid --- so maybe it's different. He doesn't have the lack of energy and his work is IMPORTANT, whereas mine is domestic.

This is one of the reasons that my creative endeavours are awry. It's all dribs and drabs and no conserted effort and in part it's my fault. I'm so cross I could burst, but anger is negative energy --well it can be -- can also be a spur to getting on but, of course, I don't have the physical 'go' to get on.

Caught in a web..........................................