'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..........................................

Missing You Already.....again

Last week I wrote a piece about the losses that are encountered by someone who acquires a disability. Today I received a comment on that post from my 'cyber chum' Amanda which I found very moving. This has encouraged me to return to the topic.

Here is part of what Amanda said:
'.........when I visited your blog and read this post, it stirred up so many feelings.................
Sometimes I think I live in denial. It is great to create art, but when I lose touch with the fact that I have cfs and what it has done to my life, I do find I can mislay my sense of wonder at what I do have. .........'

I think it is terribly difficult to be a creative person and have a chronic illness or acquired disability which holds you back and changes your whole way of being and working. When I first became ill again, 7 years ago, it was impossible to even think about creative endeavours. I simply existed on a moment to moment basis and prayed that I could get through another day without too much pain or suffering and without being too much trouble to anyone else. As things subsided I'd have vaguely creative ideas but no possibility of actually carrying them out. Over the years my condition has come to a point where I am 'up and down' but generally I manage in a limited way.

Creatively, having a chronic illness like ME feels to me like driving a car with a limiter attached. Before I was ill the ideas came thick and fast and I would have difficulty in getting them down fast enough. Being creative was about a rush of ideas and activity and then the honing of that initial exubernace so that something new could be formed and delivered.

The ongoing recovery from the worst days of illness have heralded the odd spark of inspiration, but now there is no rush and when I try to write down ideas the process is hindered by loss of memory, blurred perception, 'foggy' thinking; never mind trying to get ideas down before a new one comes up -- I can barely retain the one idea long enough. The energy to execute the idea is different too. My old way of working was very focused, very quick. There was a spontaneity, a freedom like flying. Now I'm more earth bound, more shackled.

In the end I suppose it's about trying to find new ways of working, new ways of being in the world. I think about other artists (famous or otherwise) who have had to contend with disability: Monet with his ensuing blindness, de Kooning with Alzheimer's or even people I know such as Corina Duyn or Michael Nobbs who have found ways round their ME to move forward.

It's an ongoing struggle to maintain balance between energy, reasonable health ( such as it is), domestic and relationship responsibilties and the creative urge that won't go away and needs to be fulfilled: the need to express something about how it is to be me, living this life.

As Amanda says:'.............my happiest times are when I manage to strike a balance and not go off the deep end, it seems I need to keep returning to it over and over.'

St Theresa's Prayer

I was recently sent a Round Robin email which contained St Theresa's prayer with a list of instructions about how to send it on and good things will befall me. You know the usual stuff.

It was curious because in this house, through the trials and tribulations of births, illnesses and deaths old Theresa has made herself quite felt as a presence. I've no idea how it started. I did go through a phase of buying religious statuary just because I love the imagery and because there was a funny shop that imported stuff from French and Belgian flea markets and somehow, in the darkest days, these things spoke to me. One I bought was, I thought, of Our Lady and it was only when I got home I realised that the bottom of the statue/buts was covered in roses. It was a bust of St Theresa of the Roses from France. She lived at the end of the 19th century and was quite a tough cookie in her way.

I cannot stand organised religion but I am quietly spiritual and whatever the beliefs I find a certain stillness and something to admire in this woman.

I sent off the email to 6 people as instructed. Not one has responded. Either they don't care, they don't like anything religious or the Subject line 'St Theresa's Prayer' has sent the message straight into the spam tray.

For myself I am pleased that my friend sent me the message and I have been reminded of the prayer.

St. Theresa's Prayer

May today there be peace within.

May you trust that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith.

May you use those gifts that you have received, and pass on the love that has been given to you.

May you be content.

Let this presence settle into your bones,

and allow your soul the freedom to sing, dance, praise and love.

It is there for each and every one of you.

Pretty pictures from Suffolk

I often take the camera when I walk Tiffin.

He's slow.

I'm slow.

We fit like hand in glove.

Missing you already

Partner and children have gone to big annual arts day. It's for all ages and all abilities. Involves about 500 people and lasts all day -- 10a.m. til 10p.m. This feels strange because I used to organise it ....before I was ill. I cannot fathom how I did it now, in terms of energy: the whole long run up from 10 months before, the organisation, publicity, catering, entertainment, the contracts, budgets, fundraising, volunteer drive. Then on the day I'd be there from 8a.m.to organise, rally the troops, meet and greet, jolly along etc.

One of our friends who has also gone with her child, asked if I would be going today. No. For one I couldn't possibly last more than half the morning and then wouldn't have the energy to drive back. Usually my partner would drive us there and back so I could be with the kids for at least the morning. Apart from that it's still too raw to be faced so directly with what I cannot do anymore. I know if I went I'd meet lots of people I haven't seen for, maybe, 6 or 7 years. They've moved on and so have I but in completely different spheres.

Most of the time I can block it all out. I can listen to my own and others' good advice about moving forward and not looking back. Sometimes the past catches up and I can't help but feel sad and miss the energetic person who was full of ideas and, yes, quite dynamic in my own small way.

I have learnt to appreciate the small things; learnt to love the same small patch of land I pace with the dog because I can't drive to the sea anymore; learnt to 'smell the roses'; learnt to appreciate the extra time my illness gives me with the children ('I bet they love having you at home so much') but sometimes, just sometimes, I yearn to be a grown up participating out in the world. It's all part of the shifting bereavement of acquired disability

Fashionable names, fashionable attitudes and the reality behind them

Reading some more of the Griff R-J book and struck by the ordinariness of all the boys names. When did things change ?

Back in my days of school we all had solid traditional names: Janet, John, Michael, Brian, Melanie, Guy, Linda. Julie, Sarah. Now at my childrens' school there's hardly a name we would have recognised in 1964. Who had ever heard of a child called India, Tiffany, Saffron, Harmony, Darla or Sabian. Who would have given their child such an old fashioned name as Edward, Harry, Cecily, as Henry in 1964. It would have seemed absurd and pompous.

What was it like in the 60s to have an unusual name or a 'foreign' name ? I remember one girl called Mignon (great name, I think) who was teased relentlessly. So was one of my friends who had a Finnish Mum and ate 'strange' soup and rye bread at home. Personally I loved it. I loved going to his house and speaking to his Mum and I loved the glamorous Italian woman who lived 3 doors up and whose house had shiny marble or wood floors instead of carpet. Her kitchen always had different smells to ours and her daughters were dressed immaculately.

Now everyone seems to be more tolerant and ready to experiment with different names, cuisine etc. but I wonder if underneath, that much has changed. I talk to our Polish window cleaner and hear how his grandchildren (who go to my daughter's school) are apparently accepted and yet he himself is exploited and ripped off by his employer. I think of the Portugese people who were attacked in Thetford last year (not a million miles from here). I think of walking down Woodbridge Thoroughfare a few years back. We were with my brother-in-law's then-girlfriend and her two little boys. All three are black -- not pale 'acceptable' honey colour, but black black. She was very fashionable, very elegant and very beautiful with a serene way about her. Her boys were well behaved handsome chaps. I asked my partner who is born and bred Woodbridge if people were looking at us. I had this uncanny feeling we were being gawped at. Was I paranoid or was it real ? 'They're looking at her and the boys' said my partner. We were a spectacle in that sleepy Suffolk market town --- even though for years there had been a US base not 5 miles away with GIs of every hue. We went to a little pub and ate lunch and still the stares remained. It was that day that I got an tiny inkling of how it must be to be apparently different.

Why is it that people can't just see people as people, good bad and in between, regardless of colour or race or religion. I just don't get it and never have.

Surburban heritage

When I was at Art School I did a whole tranche of work about growing up in suburbia. I didn't get to Art School until I was nearly 30 and in my younger days there was a kind of shame or embarassment about growing up in such bland surroundings. I felt I should either come from a more sophisticated background or something more feral and grungy. In other words I should have the cache of being posh or the cache of being working class and down with the kids. I wanted to be cool and where I came from wasn't cool. I grew up in quite a nice semi and was brought up with the same nice middle class aspirations as many of my neighbours and friends but that didn't cut the mustard when I was 17. My heroes were David Bowie and Warhol and the Velvet Underground, Alice Cooper, Nico. Surley they hadn't come from 'nice' houses and held their knife and fork properly, said please and thank you and watched variety shows on TV with their Mum and Dad on a Saturday night. Surely their parents hadn't had a slight distain for programmes on the 'commercial channel' ----there was only one then !

At Art School I began to reassess. Then I realised that many of the people I revered came from similar backgrounds to myself and the idea of coming from such an ordinary place seemed OK.

At the moment I am really enjoying reading Griff Rhys Jones biography 'Semi-Deatched'. With a surname like his I had assumed that he was from Wales and, indeed, he is of Welsh stock, but it turns out he actually came not a million miles from where I lived. He is three years older than me but many of his memories are mine: places, people, music, parties and he has a wonderful way of providig a space in your head where you could almost be really sitting enjoying a strawberry Mivvi whilst you read. Even his father reminds me of my father. His was a doctor. Mine was a Headmaster: the same clubbability of the professions; the same formal attire for small children of the 50s and 60s; the same lessons in how to attend grown ups' parties and hold a sensible conversation with an adult when you were 8 years old whilst trying hard not to drop the sausgae roll and vol au vent off your plate.

The best bit was always later when you had shown you were there, spoken politely to the grown ups and then they'd lost interest in you and were swapping stories and gossip with each other. One of my fondest memories is of sitting under the grand piano at my parents' posh friend's house, with a plate of nibbles and all the other kids: little girls in sticky out party frocks with bunny wool boleros and little boys in tailored short trousers and collar and ties with tartan patterns or cowboys.

Time to try again

I've been following four blogs ( readingthesigns/and velo-gubbed-legs and confessionsofapsychotherapistand michaelnobbs ) for the past six months and decided it's time to try and go back to blogging for myself again.

I feel frustrated and sad that I didn't manage to maintain it before. This was meant to be a space for me to be me without all the baggage of my condition (M.E.) but, inevitably, the illness got in the way and life became hectic and I just couldn't keep it up. I realise now (in part thanks to reading those blogs) that it's OK to be someone with M.E. and still write about other stuff: that one doesn't necessarily exclude the other. I can't escape the illness, even in a virtual world, so I may as well get on with it and be more honest with myself and about myself. All sorts of stuff has happened with regard to a diagnosis and many of my fears and intuitions have been confirmed in the last two years. This initially led me to a place of graet anger and frustration but I'm gradually coming to terms with things again.

Recently 'Reading the Signs' has been trying to find a way to express in words, through a poem, how it is to have M.E. Her recent comments inspired me ---- well they didn't actively inspire, they kind of seeped into my unconscious so that I woke this morning with this verse in my head.
I'm not usually taken to words like this - my head works more visually, but I know how I feel about the illness. Many people, paricularly women, seem to envisage the illness as some kind of seedy man who preys and stalks. I've been stalked in real life and it isn't that feeling for me. It's much more parasitical....................



Blessed curse,
No dripping blood for me.

Insidious lover
Attendant on my misery.
Hands that grab and prey and pull me down,
thrusting, clawing, pawing.

Drown.

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New life blossoms and nourishes

Partner and children have gone away for a few days. I was to have gone too but the holiday was booked before we had Tiffin and none of us had the heart to leave him in kennels or with someone else whilst we all went away. It’s only 5 weeks since his original owner died and the poor old dog would’ve wondered what on earth was happening if we all disappeared.

As it is, it has been quite nice to be alone with Tiffin. At first it was hard to let the children and partner go; especially when my daughter howled as the train left and wanted me to come too, but Tiffin and I have gotten along really well and I’ve discovered that he likes a cup of tea (one sugar).

Yesterday I was weeding a bit of the back garden and then went to do something with the chickens. Normally I am only with the chickens for a few minutes --- with Tiffin on the other side of the fence ---but yesterday I was longer. Tiffin got rather cross and seemed to feel left out – like when a child feels you’ve spent too much time and attention on a sibling. He let go one of his lovely barks –it’s not yappy but a sort of questioning, throaty ‘wrooafff !’ He looked through the slats of the fence so pleadingly.

Later I was sitting on the bench under the apple trees with Tiffin having a cup of tea. I noticed that the rose bush we planted above the grave of our first dog, Dory, had come into bloom.

As one life ends another begins.

Dory nourishes the rose and Tiffin nourishes me.

Hector