Coming to terms with Disability

Now this is a bit naughty because, in a way, I'm cutting and pasting from someone else's blog (naughty, naughty....slapped wrist !...no, not slapped wrist, ....sorry everyone, very un-PC...too physical...I meant 'serious verbal admonishment).

Anyway up...

Seahorse over at The Beauty Offensive has been discussing her journey in coming to accept her disability, her new status as 'a disabled person' and the acceptance (or otherwise) of this status by those around her.

Reading her post I was moved to post my own comment and this, dear reader, is the power of blogging, because it was only in the writing of the comment that my own rather muddled and convoluted thoughts on the subject presented themselves to me on the screen.

I must admit I was rather pleased to have my ideas and thoughts presented so clearly to me and, having read Seahorse's response I felt I wanted to re-present them on my own blog.
So here they are, with apologies to Seahorse ( who is a very perceptive and lyrical personage).

You open up a really important issue.

Having worked with people with a disability for years, then having a son with a disability and now having become unwell and starting to realise that I am disabled, my life has been(thus far) an unfurling of understanding.

I’ve known about the social model (of disability) for years but it’s a different bucket of eels when you begin to think it might apply to you. I think we all have a degree of misunderstanding about others’ conditions and issues. What counts is acknowledging that and being prepared to listen to others and hear our own prejudices too.

My own difficulties are hidden. No one would know the difficulties I have from day to day, moment to moment and how hard I try and have tried to ‘pass’ as ‘OK’. (Now I have reached a stage where I don’t know why I tried to hide it ). I even did that when I worked for a charity that was all about promoting the rights of disabled people. Many other employees used wheelchairs or were deaf or visually impaired. Somehow, I felt that because I didn’t need those things I wasn’t really ill, wasn’t really disabled --- didn’t have enough points to join the Club (as one quite well known disabled artist said to me only partially in jest ‘I can call myself a crip because I am one. You can’t call me that because you’re not’!). It’s all about perception --- by yourself about how and who you are and by others about what they regard as
‘disabled’.

One more little story told to me by a friend who has a son who is autistic:

She went to a party with her three children, one of whom is autistic. He has only just reached the stage where he can tolerate such social occasions and where his mother feels secure enough to take him.

Shortly after they arrived she noticed a young woman staring and staring at her autistic son. (He has quite unusual mannerisms which can bring unwarranted attention.) My friend tried to ignore the stares and brush it off as the woman’s ignorance or her own paranoia. The young woman still stared and stared.

Finally my friend could bare it no longer and addressed the young woman directly:

‘Will you please stop staring at my son. He has a disability. He is autistic.’

Over her shoulder an older woman’s (the girl’s mother’s) voice said,

‘So is she’

Yesterday, another friend was asking me about this whole subject and where I thought I was with it all now --- after 7 years at home. If it wasn't for Seahorse I would never have been able to explain myself so succinctly, so thank you Seahorse for bringing the whole business to mind.

The Who - My Generation (Marquee Club 1967)

Been another busy few days with me trying to keep up: finishing another project and helping at a Fete.

Last night I stayed up too late and watched The Who at Glastonbury. I'm always hesitant to watch older bands like this because I fear now that they are increasing in years their powers will have diminished. I should not have been so sceptical in this case. The energy and passion is still there and they were fantastic.

Even though I was only 9 or 10 when this came out, I still identified with the lyrics and loved The Who.

You gotta hand it to them --- they've still got it and thank God two of them haven't 'died before they get old'. Fab ! Gear !

Painting

With judicious and careful pacing (see the need for same in the video link below !) I have managed to finally finish the painting commissioned by my brother-in-law. It's the first painting I've finished in a long time. I'm afraid it's not a very good photograph.

I was left to paint whatever I liked so I had to come up with something that summed them up as a couple and a family(this painting is to celebrate their 20th Wedding Anniversary). For all sorts of reasons I have based it on medieval and early Tudor paintings.

In case you're wondering, I do not have a screw loose and nor am I colour blind. My bro-in-law's wife's hair is green and has been for as long as I can remember and the bird on his shoulder is his parrot --except it is based on an image of a parrot in a medieval Bestiary --- so it looks rather extraordinary.

Have a look at this.........

Greenwords has posted a link to an excellent video made by an Australian TV show about ME.

Take a look. If only UK television would make such an unbiased and thorough piece

Go here

Loneliness of the long distance 'only'

Yesterday I received a letter from the wife of my father's work partner . My Dad died nearly 8 years ago although it seems like last week. I haven't seen his partner since my mother's funeral 3 years ago and yet the letter brought a sudden rush of unexpected sadness.

In many ways this feeling is inexplicable. I wasn't especially close to L (Dad's colleague) though I do have happy memories of big Xmas parties at his house with a big family gathering and being made to feel as if I was a part of it. As an only child, this annual celebration was a lovely thing for me and I really enjoyed seeing my parents enjoying themselves at such an occasion. We were a small, tight family unit (as families of only children often are) and such a crowd of people having fun in a domestic setting was a rare experience for me. My mother was also an only child too, with few other relatives, so our extended family was small anyway.

I suppose the sadness is about being an only child really. After the initial feeling, my next thought was 'I can't tell Mum & Dad'. It felt weird that they weren't there to share the news. Apart from working together for maybe 10 years, my father and L had been in the same 'work circles' for years, so my parents would have been sad to know of his death and there could have been some kind of conversation about L. and the parties and the holidays and the work etc.

As it is there's no one to talk to about it. (Well no-one who really knows about those experiences. As an only child with no cousins (no relatives apart from my partner and children) there's no one to talk to about it. When you're an only you really are alone for life. You can marry, have children, get on with and love your in-laws ( and I have and I do), have close friends, but you cannot share the memories of childhood, the funny family rituals in the same way because once your parents have gone, there's no one else who has quite the same connection.

This isn't meant to be maudlin but it can be a lonely road at poignant times like this and is a reminder of how much you miss the closeness of your own parents.

I thank the Lord that we were blessed and have two children who can share and support each other.

AN ONLY CHILD'S TEA-PARTY

When I go to tea with the little Smiths, there are eight of them there, but there's only one of me,

Which makes it not so easy to have a fancy tea-party as if there were two or three.

I had a tea-party on my birthday, but Joe Smith says it can't have been a regular one,

Because as to a tea-party with only one teacup and no teapot, sugar-basin, cream-jug, or slop-basin, he never heard of such a thing under the sun.

But it was a very big teacup, and quite full of milk and water, and, you see,

There wasn't anybody there who could really drink milk and water except Towser and me.

The dolls can only pretend, and then it washes the paint off their lips,

And what Charles the canary drinks isn't worth speaking of, for he takes such very small sips.

Joe says a kitchen-chair isn't a table; but it has got four legs and a top, so it would be if the back wasn't there;

And that does for Charles to perch on, and I have to put the Prince of Wales to lean against it, because his legs have no joints to sit on a chair.
That's the small doll. I call him the Prince of Wales because he's the eldest son, you see;

For I've taken him for my brother, and he was Mother's doll before I was born, so of course he is older than me.

Towser is my real live brother, but I don't think he's as old as the Prince of Wales;

He's a perfect darling, though he whisks everything over he comes near, and I tell him I don't know what we should do if we all had tails.

His hair curls like mine in front, and grows short like a lion behind, but no one need be frightened, for he's as good as good;

And as to roaring like a real menagerie lion, or eating people up, I don't believe he would if he could.

He has his tea out of the saucer after I've had mine out of the cup;

You see I am sure to leave some for him, but if I let him begin first he would drink it all up.

The big doll Godmamma gave me this birthday, and the chair she gave me the year before.

(I haven't many toys, but I take great care of them, and every birthday I shall have more and more.)

You've no idea what a beautiful doll she is, and when I pinch her in the middle, she can squeak;

It quite frightened Towser, for he didn't know that any of us but he and I and Charles were able to speak.

I've taken her for my only sister, for of course I may take anybody I choose;

I've called her Cinderella, because I'm so fond of the story, and because she's got real shoes.

don't feel so only now there are so many of us; for, counting Cinderella there are five,—She, and I, and Towser, and Charles, and the Prince of Wales—and three of us are really alive;

And four of us can speak, and I'm sure the Prince of Wales is wonderful for his size;

For his things (at least he's only got one thing) take off and on, and, though he's nothing but wood, he's got real glass eyes.

And perhaps in three birthdays more there may be as many of us as the Smiths, for five and three make eight;

I shall be seven years old then (as old as Joe), but I don't like to think too much of it, it's so long to wait.

And after all I don't know that I want any more of us: I think I'd rather my sister had a chairLike mine; and the next year I should like a collar for Towser if it wouldn't rub off his hair.

And it would be very nice if the Prince of Wales could be dressed like a Field-marshal, for he's got nothing on his legs;

And Cinderella's beautifully dressed, and Towser looks quite as if he'd got a fur coat on when he begs.

Joe says it's perfectly absurd, and that I can't take a Pomeranian in earnest for my brother;

But I don't think he really and truly knows how much Towser and I love each other.

I didn't like his saying, "Well, there's one thing about your lot,—you can always have your own way."

And then he says, "You can't possibly have fun with four people when you have to pretend what they say.

"But, whatever he says, I don't believe I shall ever enjoy a tea-party more than the one that we had on that day.

Fear, foreboding, loathing and courage

After my last post I received an interesting post from the splendid Ana who paints the most beautiful images and also has an interest in dreams and myth.

I was thinking about the recurrent dreams of my life and, in particular the one I had as a child which, amongst other things, involved large machines. Ever since I have had a kind of fear, dread, almost phobia about large machinery. I can deal with it but I have to really steal myself to be near ships, diggers, planes, the sorts of machinery they exhibit in museums etc etc. They really unsettle me and fill me with a kind of foreboding.

A few weeks ago I was involved in quite a long discussion at Seats for Landing about the pros and cons of various, apparently miraculous cures for ME/CFS which involve retraining the way one views the possibility for recovery, action etc. This led to a discussion in my head about the extent to which fear and foreboding prevents PWME from moving on.

For my part I honesty believe that the mind and body are inextricably linked and that, whilst the symptoms of ME/CFS are biologically/physiologically/neuroligically based, there is a point at which the mind can enable one to move forward a little further. This is not always easy or possible, but there are times when I have believed, in all sincerity, that I feel too ill and too weak to do something and then, for one reason or another, have had to try and found it was possible after all.

I cannot believe that my mind alone will enable me to overcome my physical symptoms to the extent where I could once again work a 50 hour week, travelling the length and breadth of East Anglia, runnning workshops, leading training sessions, making new artwork but I am coming to a point where I think I have to challenge my own preconceptions about what is possible for me and look towards activities and challenges more positively.

I have no real conclusions to offer but just wanted to share my thoughts. When I look at other people with M.E. (or other disabled friends) who have achieved their dreams despite their condition, I look forward with hope. One such friend is the Dutch artist Corina Duyn. Another is Amanda and then there's Michael and Azirca, Signs and NMJ . They all hold fast to their creativity and hang on in.

I'll see you in my dreams.......maybe

Poor Signs has an attack of shingles --- as if she doesn't have enough to put up with at the moment. She's bearing up well though and keeping her sense of humour which is admirable since shingles can make you feel horrid. I should know because I've had it too and it's not nice.

What is also admirable is that she has continued to read her usual blogs and that includes this one where she viewed the last post of the Sgt. Pepper video: gave her strange dreams which combined the Blue Meanies with all sorts of other flotsam and jetsam in her memory ocean.

I have to say that my dreams are always like that and always have been: a mish mash of bits of my own reality all reassembled into a new dream world with no acknowledgement of actual space and time. I also always dream in colour and have three dreams which I have never forgotten --- one because it recurred and recurred when I was about 3 until I was about 6 and two others which were one-offs in my teenage years but which really shaped how I look at some things in the world.

Not once have I dreamt I was flying, having tea with the Queen (though I once made an installation about that subject), forgotten all known facts as I walked into an exam or run for a train just realizing that I am naked. Does that make me boring or odd ? My children often tell me I am odd so I must conclude that it is the latter. Mind you I often tell them they are little gargoyles and they never believe me so maybe I shouldn't believe them.

I'm off for my midday nap now. I'll let you know if I have any good dreams

Sgt. Pepper's Lonely Hearts Club Band

Two posts today!

Happy Birthday Sgt. Pepper: 40 years ago today.

I have loved this since it came out when I was 10. At school it became really cool to like it again in the 70s and now 'Yellow Submarine' is my daughter's favourite film.

It's really evocative to me of a child's view of the Summer of Love. Even at 10, I had flowery clothes, a little leather pouch purse round my neck and insisted on walking round barefoot. It was a magical time for me before the responsibilities of adulthood hit home.

Chickens

Another lighter post about creation --- well, chickens anyway. As I've said before, we keep chickens and every year the population boom comes round. We always seem to have very 'busy' cockerels so there are lots of chicks

Here's the Maternity Block a few week ago

Snowbell keeping things warm



































Cinnamon too

Soon the chicks are born and it's all hands on deck for the annual nursery fest: keeping the little perishers in check, teaching them how to peck at everything in sight in case it's edible, maintain the pecking order, dodging the guinea pigs and the dog and watching out for the rooks and the magpies and the cat from next door. Last year we lost three chicks to the rooks.

Mum and the kids having High Tea

Dad and the other girls have tea outside

Take the chicks out for a quick walk before it's back inside for a quick story and bedtime. They usually like a quick read of Chicken Licken or something more cultural like 'A Tale of Two Chickies' by Charles Chickens.