Days Like This

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A Rainy Day in August – 2018

I remember days like this, when my white socks only reached my ankles. Days where the seasons played hide and seek, daring the sun to cower behind uninvited clouds.

Boarding school days of sleety grey, where the light was swallowed up by lead lined windows and religiously grained wooden panels. And where empty corridors cried in the lonely shadows.

The threat of rain kept us indoors, roaming silent weekend classrooms. Friday’s chalk still fresh but forgotten, in the teacher’s rush for weekend respite.

I would curl up on a window seat and follow rain drops as they mingled and merged towards their final earthy home. My home, in the still silence of unopened books, felt like a lifetime away.

My home, where the steam of Bolognese sauce would wrap itself around me like a comfort blanket. Mum defrosting minced beef in a boiling pot and cooking fists full of spaghetti.

The chopping of the onions brought tears to my eyes, making the raindrops stop for a second as if startled by their own reflection.

Now,  I watch my breath warm the glass but in an instant, it has gone and, as the light fades outside, all I can see is a little girl staring back at me.

With so few rainy days this summer, when the rain did come, it brought a flood of memories.

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I Fall

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I stand, alone

I turn, I twist, I stall

Feet, legs, arms

I lurch, I grab, I stab

The air, then

I fall, I fall, I fall

Head slams step,

Fist finds floor,

Heart stops time.

Pain floods my brain, then

I Rage, I Rage, I Rage.

Life cracks the whip

Alive or dead?

I rise, I rise, I rise

And move on.

2nd August, 2018

The art of falling

I live with a condition called Cerebral Palsy which is as unique as I am. Everyone with CP has a different experience of it.  For me, falling over is just part of who I am. I have been falling ever since I could walk. I have split my head open, knocked teeth out, bruised ribs and twisted ankles but, up to now, I haven’t broken any bones. Why? Because I was taught how to fall, a skill I share with stunt guys, which I think is pretty cool!

After the shock and the pain, I always feel anger. Anger at myself for losing my footing. Anger at the Universe for giving me a good kicking.

Falling over, in public, is excruciatingly embarrassing,  for anyone, right? Yet my own feelings of inadequacy fascinate me, Is it because falling shows frailty, an inability to stand on one’s own two feet and be in control? Or perhaps it’s because it confirms some non-disabled people’s stereotypical views about us, disabled people, needing to be cared for? Anyone who knows me would laugh out loud at this!

I don’t like fuss. My husband knows just to walk away and let me get up in my own way and in my own time.  He gets a few dirty looks for it but he has discovered that it’s better than an angry wife! 🙂

 

Animal

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Nature has her way of reminding us of our origins, don’t you think?

Remember the burn of snow?

Mornings clad in ice?

Now sweat journeys down my back

In search of coolness.

Having lost my fur,

Skin feels sticky to the touch

It pools where my tail once was

Playing with the Spanish Seguidilla form. It’s seemed fitting in this Norfolk, UK heatwave. 🙂

Butterflies

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History, a life, the heart, the brain

Flow to the taste buds and flew back again

That decades or more past Keats’s span

Makes me an older, not a wiser man

Taken from ‘A Kumquat for John Keats’ By Tony Harrison,

These lines from Tony Harrison has given me a lot of comfort recently, as I have not been acting my age!  Middle age, marriage, grown up children, experience… They do not protect you from that school girl crush that whacks right in the stomach!

Beware of butterflies!

Butterflies

I let a butterfly in, t’ other day.

It flew in through my old myopic eye

And fluttered recklessly around my brain.

There, it disturbed a million sleeping stars.

When, it found out my unprotected breast.  

He buried his oil slicked wings deep inside

I thought my fractured heart was bound to break.

Leaving me sad, unanchored and exposed.

In my stomach, it found some long-lost friends

And partied on through the moon spangled night

By morning, nothing really felt the same

Though I knew they had all got up and left.

 

Homecoming

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We drove on ribbons of roads.

Across the land to bring you home.

Witnessed tender leaved fields

Grow into rugged ramparts

Built on craggy castles;

 

Time has changed you,

Like the sea changes the shore.

Making good the jagged edges of creation,

Rounding you off into a separate whole.

You stand alone.

 

And I am proud, so proud of you, my son.

(Journey from Norwich to Sheffield to pick up our son, after 4 years at Sheffield University.)

Image 1 Young Carter - Homecoming

Pure happiness

Image 2 Carter 2006

Cheeky Boy!

 

Carter at Shefield University Maths Ball 2017 v2

Standing Tall

Tessa

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I learned of Tessa’s death at the Norfolk Watercolour Circle Meeting on Saturday 1st July. It was a shock because I had not realised she had been ill. But that was Tessa all over, not one to make a fuss about one’s personal life. I like to think that her regular attendance up until a few months ago gave her some sense of normality in what must have been a very scary time for her.

I will always remember our first encounter at the Norfolk Watercolour Circle;. I had only just started going to the monthly meetings in the summer of 2015. My husband, the real artist, had joined a few months earlier and I was tired of being left at home on a Saturday afternoon so he suggested I come along. Little did he know that I would volunteer to be secretary in November after an impassioned plea from Norman, the Chair. Norman had taken on the secretary role as no one from the group would volunteer. I could see he was fed up with the amount of work he was having to do.

          “Are you sure you want to do this?” Tess had asked at the tea break. “It’s not an easy job, are you sure you can do it?”

I was miffed but not surprised. People have been underestimating me all my life, due to my disability. I guess they didn’t know me from Adam, so could only go on their own assumptions.

          “I can’t see anyone else volunteering.” I said, “Why don’t you do it?” Tessa backed off then.

I felt I had a lot to prove over the next few months but slowly, members started talking to me and by the AGM in February, I felt part of something and it felt good. The role was not particularly difficult, it was quite low maintenance in the beginning. But like most jobs, it grew and I soon realised what Tess may have been getting at!

The more I saw of Tess, the more I grew to like and respect her, she had quite a knack for speaking her mind and I kind of liked that. I also discovered that she had a wicked sense of humour behind her forthright exterior, which was a real privilege to witness.

I will miss Tessa. I’m sorry we didn’t get a chance to say goodbye. The day I heard of Tess’s passing, we had a visiting artist at our meeting. Garry Pereira. http://www.garrypereira.co.uk/ . Garry is known for his beautiful seascapes and spoke passionately about his craft. So, whilst everyone else was drawing Norfolk Seas I was inspired to combine Garry’s unique approach and knowledge with my hopes that Tess had found peace.

Tessa
A thoughtful discussion. Tess, talking with artist, Chris Hutchins (middle) and Ray  5th November, 2916

For Tess…

Norfolk Seas

Water like slate,

Cold, grey erosion

Of land to sea

Sea to land

Taking and giving

Pulling me in

Making me let go

Of life’s clutter

White foam washing

Body and soul

Until I am calm and clean.

Ann Young

1st July, 2017

Dedicated to Tessa Phillips, who passed away earlier this year.

I apologise to those of you reading this, who didn’t know Tessa. It may seem that my posts are becoming somewhat morbid. I promise that I do write other stuff, some of it published on the Disability Arts Online website. I guess this site is where I keep treasured memories.

A Memory of Trees

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 Staring up

I see leaves

Dappled gold

Warming my face

While shadows dance

Like joyful swallows

I am young here.

The lines of life, yet unseen

As I breathe in the scent

Of heavy summer roses

And hear doves gently call on

Peaceful rooftops

This moment, like my youth

Has long since passed

Yet, its echo still remains

An instant image of carefree days

When I still believed the world was mine.

 

Ann Young

 

For Barry and the Norfolk Watercolour Circle

4th June 2016

I am the secretary for the Norfolk Watercolour Circle. I don’t draw or paint but pay my way by doing the minutes.

I wouldn’t share my pencil drawing of trees at our last Watercolour Circle meeting because I have always used words to create my images. It’s just the way I am made. I wish I could do both but I’m not that talented and have the greatest respect for those who are.

But as I was making my crude marks, I remembered hot summer days at Special boarding school, in Ely. It was always quiet at weekends, with very little to do. This was in a time when the sun was considered harmless to our young skin and we were herded outside by hot and bothered staff. We had beautiful grounds; the main feature was a huge Plain tree which dominated the front lawn and gave us much needed shade. I loved our well cared for garden and now realise how lucky we were to live in such beautiful surroundings. It couldn’t replace being at home with my family but I found plenty of hiding places where I could be alone.

Men o Pause

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I’ve lost many things in my lifetime; children, parents, friends and lovers, cats! Like most women, I’ve learned to adapt and accept my fates as part of the human condition. Yet I can’t help feeling that time is so very cruel, especially to women. I went to the GP recently, having stored up a few minor ailments to justify my 10 minute consultation. My broken toe nail wasn’t really an issue, I knew the deep break would right itself eventually; neither was the annoying ‘growth’ that had suddenly appeared on my neck, really causing me sleepless nights! Even though, it is a constant reminder that I’m no longer a young woman. My real reason, and I was building up to it slowly, was my lack of periods.

The young male doctor listened carefully, tapped a few keys and said,

 “Well, Mrs Young, it’s not unexpected at your age. We can do a blood test, but the results may not be conclusive.”

My heart sank. I didn’t want to hear that. I wanted him to tell me that I still had years of fertility left and ask me if I might be pregnant. Not that I wanted any more children. Oh no, I’ve been there and done that. I wanted my life back, as it was, before marriage and children. I wanted a second adolescence without the teenage angst and acne!

I know that this is not uncommon among women of a certain age. It’s as if we know that this Pause is our last chance of freedom, before the ‘ravishes of time’, wash over us and we find ourselves in a nursing home drinking tea and waiting to die.

I think I feel this more acutely because I’m afraid of being an old, disabled woman instead of a young disabled woman. I’m afraid of relinquishing my independence and losing what physical and mental elasticity I currently have. Yes, I admit that I am a real control freak. I have had to be, in order to keep autonomy and assert myself in a world that still expects disabled people, especially older disabled people, to be passive recipients. The fact that I have very few older role models to actually show me any positive alternative, scares me even more.

And how do I tell my husband that I want to go back to being a person he never met? Maybe he’ll find it exciting, although I was a very selfish and obnoxious youth who revelled 0in her sexuality and didn’t take any prisoners. Besides, I don’t think my twenty year old son would be too impressed with a youthful version of his mother. There aren’t many older women who can successfully pull off being younger without good genes and a lot of money!

I have to wait another three weeks to have the blood test done and then there will be a wait for the result or lack of. I’m not sure what I am hoping for but whatever the result I hope I can put my life on play again instead of Pause.

 

Equality Is….

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It feels like Christmas has come early! I finally got my car back from the garage after a battle about a failed MOT test. The garage made mistakes, I’m fine with that; I’ve made loads of mistakes in my lifetime. However they really annoyed me when they misdiagnosed the problem and then blamed another garage’s work, incorrectly. What’s that saying?

         A bad workman blames his tools, or in this case another workman!

They then refused to release my car until I had paid for the unnecessary work, they had carried out. Big mistake! You just don’t do that to a disabled person who relies on their car! They were holding my independence to ransom. It’s hard to explain to non-disabled people, how devastating this is. Many of us have a very intimate relationship with our equipment. We can never take anything for granted because if you lose or break these vital objects, you are hurled back into a state of dependence. To put it bluntly, it is like being stripped naked and shackled to a rusty pipe in a dark damp warehouse. . You’ve seen the crime dramas!

After making a complaint about the poor service I had received, the manager had a meeting with me to discuss the issues I had raised. It was all going fine and dandy until he earnestly looked at me and said,

“But you must understand, it’s our policy not to release a car without payment. We have to treat all our clients the same.”

Well, something taught and brittle snapped inside and I really hoped it was just my battered psyche and not anything requiring immediate medical attention. I’m not sure how I maintained an aura of calm as I smiled my way through the rest of the meeting. All I could think about was getting my car and money back!

Chewing the meeting over in my agitated mind, I was reminded of a great equality training video that I used back in the early 90s when I was just starting out as a Disability Equality Trainer. Let me set the scene for you…

An inspector is coming to assess a Social Service Department and the receptionist is overly anxious to make a good impression as she knows that cuts will be made. A wheelchair user arrives at the council office. He parks in the disabled parking bay and transfers into his wheelchair. Unfortunately he is unable to access the building because the automatic door is locked and there is no call button. Have you guessed where the story is going yet?

He encounters many more physical barriers in his quest to arrive at his destination. He is about to ask for directions when a member of the public grabs him and pushes him through some closed double doors, assuming he needs Social Services. Before he can speak, the overly anxious receptionist asks him to wait his turn while she deals with the woman, who is assumed to be his carer. When the receptionist eventually turns to him, she continues to make assumptions by informing him that the Motability office is down the hall. However she soon holds her tongue when he explains that he is the inspector and he wants to start in the accounts department.

Embarrassed and flustered, the dialogue between anxious receptionist and annoyed wheelchair user goes something like this:

“We treat everyone the same, here. We’re very hot on equal opportunities, it’s coming out of our ears!.

“I know, that’s the problem!!” He retorts.

“What do you mean? She asks, puzzled. He turns, on his way out and says,

“Just try using the doors, in a wheelchair!”

I trained a generation of local policy makers long before we had the Disability Discrimination Act. But most of them, have gone now. Hopefully they are enjoying a comfortable retirement and not sitting in a poorly funded care home, stripped of their dignity because the staff are untrained, over worked and underpaid!

When will people in positions of power realise that treating everyone in the same rigid, mechanical way without any kind of understanding or flexibility is not equality! At best, it’s just laziness.

Real, meaningful equality is about treating everyone as an individual and recognising that some people will need adjustments to policies and procedures, in order to thrive and maintain their dignity.

I’m not talking about removing the goal posts and making life a bed of roses, I’d hate not having a challenge or never experiencing failure when I make mistakes. Equality is…. About adjusting the goal posts to take into account the fact that not everyone can use their feet to kick the damn ball!!

So, with my garage fiasco, they could have offered to check the problem themselves or drive the car to the other garage to get the exhaust checked. Not leave me in the lurch with a car I could not legally drive. Thankfully the wrongly accused garage went the extra mile and took my car to a specialist to diagnose the problem and yes, of course, I got my money back!

Mother and son posing with car

Thankfully, we were able to get our son back to university!