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.

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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!

Dad: 15 April, 1939 – 16th May, 2015

Granddad and Grandson

Granddad showing my Son his coin collection

Dad died on Saturday.

“In his sleep.” They said, at the care home.

I wonder if they say this to all the absent relatives? It’s easier to believe that than to think he may have suffered. I feel relief that he has finally gone. It’s strange not to feel sadness when a family member dies; I was devastated when mum died fifteen years ago.

How can I grieve for a man that I could not understand? After a childhood of fear at his angry outbursts, my love turned to disappointment as I realised that I did not share his polarised beliefs about white, male superiority. Looking back, I feel fortunate that I only witnessed the claustrophobic atmosphere on school holidays; when my impairment made it impossible to escape endless hours of cricket on ‘his’ television.

Yet, we did share good times along the way. Dad loved nature and we spent rare but memorable summer days wandering hedgerows laden with blackberries. The fishing trips were filled with sounds of casting off and lazy dragonflies coasting along dappled waters. I dreaded the days Dad would cook his curries which he would insist were mild as his nose streamed and the sweat poured from him. These childhood memories are distorted, distilled into short points in time and dispersed with my other life at boarding school.

I think Dad was a sad and angry man. Some may say selfish, others a product of his time. It was clear that his inability to form healthy relationships with people made him isolated and bitter. He hated that mum was the one we ran to and shared our deepest thoughts with. Being as he was, he could never compete with her warmth and generosity.

What makes a man so inept at sharing his life? What makes a man think that his sexual conquests and feelings of superiority were more valued than being a loving husband and father? I can only guess that his childhood was not always a happy one and his survival mechanism was to retreat into his own disillusioned world. A world that he could control and where he was always the king.

I will remember the good times; of sitting on his shoulders as we all wandered down a country lane, picking blackberries and listening to birdsong. A time when we were happy and still had the luxury of our childhood innocence.

Dad and Ann

A time of innocence

18 05 15

Old Friends

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This is my 50th year on earth. To celebrate our survival, my best friend, Tanya Raabe – Visual Artist (also 50 this year) and I spent a few days together in my home county of Norfolk, UK. I was the ‘party planner’ in charge of ensuring we had a great time, a time to remember in our old age. I think I was mostly successful despite the barriers that befall us. We are both ‘Dissas’, that is, strong disabled women who have been through a life time of discrimination. We have both fought hard to be treated equally although even now the dark shadow of inequality sometimes engulfs us. The only difference is that now, we choose our battles carefully and refuse to allow others to spoil our fun.

Day 1: It’s a lovely day, let’s go shopping. After trying to find the accessible route out of the hotel car park, we finally give up and ask. Minutes later we find ourselves on Prince Of Wales Road but the steep ramp has drained my scooter and I know I won’t make it anywhere and back without a charge. Tanya goes back to the hotel to get the charger as I sit on the pavement trying not to attract too much attention. I did consider getting a can of diet coke but remembered that people had a tendency to think that a stationary disabled person, with a can is obviously looking for a hand out. It wasn’t worth the indignity or the ruined drink, which would probably cost more than the ‘sympathy’ money I might receive.

We crawled to the cinema where some lovely young men, not much older than my son, allowed me to plug the scooter in while we watched the film. It seemed a shame to sit in a dark, air conditioned theatre when the sun was beaming outside but our choices were limited and it felt quite decadent to be in the cinema in the middle of the day. I thought we would be alone but quite a few people joined us to watch a dark film about a child murder in post war, Soviet Union.” Child 44″ was perhaps not the best film to build up a party spirit but it was actually very good and the staff at Odeon Norwich were lovely, nothing seemed to phase them, even when Tanya requested help in the toilet – she had dropped the hotel key card on the floor.

Blickling Hall full frontal

Stately Homes can be tricky beasts for us…. Photograph by Alan Brooksby.

Day 2: Bolstered by our positive experiences in Norwich, we decide to venture further afield. Blickling Hall is a beautiful estate in the depths of Norfolk and boasts a tenuous connection with Anne Boleyn. Stately Homes can be tricky beasts for us Dissas but having visited before, I was confident that we would have a good day and encouraged my husband to take time off work to join us. The first obstacle was how to get there. I wanted to drive but Tanya’s electric chair was too heavy to go into my car without a hoist. However with 3 people and my fully charged scooter would not fit into her car. The solution was to book a scooter at Blickling Hall for me to use – perfect, or so we thought.

If only they had told us that they were down to a single scooter and would not be able to hold it for us. My face dropped as they explained that due to our late arrival, they had let the scooter go to another. I spent the rest of the day being pushed around by my poor, soon exhausted husband (I’m no spring chicken) as I looked longingly at the guy on ‘my’ scooter, who was totally unaware that my jealous eyes were pursuing him. Thankfully, the weather was good and we spent the rest of the day laughing at the irony of the fact that they did have a large all-terrain scooter on charge but wouldn’t let me use it because it wasn’t suitable – they must have seen my driving! The day and our faith were rescued by a lovely evening meal at TGI Friday on Riverside in Norwich where Tanya had her first cocktail and there were no access issues at all!

Day 3: A bit of retail therapy was needed after our brush with all things historical. Norwich has two shopping malls and I love them both. Chapelfield is the younger of the two and still feels shiny and new; boasting shops like House of Fraser and Monsoon, not to mention the Apple Store. Tanya had fun in Apple as the terribly helpful sales assistant searched for an App that would allow her to take voice activated photographs. Let’s just say, there is a gap in the market. I suspect Tanya knew that it couldn’t be done she was just enjoying the attention. The vibrant market showed promise as we easily moved through the labyrinth of market stalls, taking in the smells of fresh fruit and veg mingled with pie and mushy peas. We ended our day, putting the world to rights atop a hill, outside Norwich Castle in the spring sunshine.

If I have learned anything in the last 50 years, it is the value of true friendship, based on mutual respect and understanding. I consider myself lucky to have met Tanya, all those years ago at college, at the tender age of sixteen. Such salad days! Like my loving husband and beautiful son, Tanya is a constant presence in my life which I can’t imagine living without.

Happy 50th dear friend.

Two middle agged Dissas

Putting the world to rights.
Tanya (left) Ann (Right) Photograph by Tanya using a voice App.

Human Needs to Write

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Goodness, it’s been so long since I have been here! I miss it, the thrill of making words fall from my fingertips on the page. I had a break, tried to write a novel but that waits, half. finished on several memory sticks that lay, accusingly on my desk. “Soon” I promise, not quite believing it. But I am here and that is a start, a gesture to my good intentions and I will be back, very soon.!

Belonging

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Ann, Karen Steve

Annie & Annette

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Photographs From top
Ann with cousins Karen and Steven
Great Aunty Annie and cousin Annette
Arkwright Street, Nottingham

I lost a lot of my childhood. My young green roots were never allowed to dig in anywhere, long enough to find any real sense of belonging. Even now, I find it easy to walk away, as if all connections are only temporary and I know other people find this hard to understand but this is what society has created, a generation of lost souls.
I was sent away to boarding school, like so many disabled children in the 60s and 70s. There is no way of ignoring the fact that this has consequences for a child of four; there are always consequences they just don’t emerge until adulthood as child abuse survivors will understand. The hardest thing was losing my mum to cancer. Like so many of my family on Mum’s side, smoke was in her blood. The seamlessly harmless mist swirled through her tired body night after night, infesting and destroying her lungs. When we lost her, I felt cheated and angry that I had so few childhood memories to cherish.
So, I cling to my earliest memories, before the trauma of separation began, before the loneliness of dark dormitories and deserted corridors. I remember the place I felt happy and safe, where even the language possessed you and held you close. That place was my Grandma Sarah’s house in Traffic Street and then Arkwright Street with, Our Nan, Our Uncle Billy, Our Aunty Sheena, Our Mum and Dad, Our Susan, Our Robert, Our Great Aunty Annie and Uncle Maurice, Our Uncle Les, Our Karen, Our Annette, Our Steven and Our Neil… I never knew my Granddad Alex, a miner, his lungs full of the black dust and smoke, died before I was born. A quiet, gentle man who never raised his voice by all accounts and his children were just the same. Unfortunately, it is not always true that women choose husbands who remind them of their beloved fathers!
These streets have gone now, pulled down and replaced by modernisation and progress. No more dark, scary, outside toilet or the comforting sound of trains rumbling overhead; no more searching around for coins to feed the metre or huddling round the open fire; no more weekly visits to the local Baths, chlorine clinging for days. Yet, the love I found there made memories that I cherish because without them, I would be totally lost.

Where I Come From

I come from a terrace
With toilets outside
Where work is your life,
A matter of pride

I come from the pits
Black coal and dust
I come from cold nights
Heated with lust

I come from hard brick
Discoloured with smoke
Where blood is so thick
Its strength feeds all hope

(Note to readers: I’ve been working on this piece for months, editing and re editing but never capturing the essence enough. However, there comes a time when you must let things go and just hope they survive and manage to connect with somebody.)

Ageing Dis Gracefully…

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It is no picnic growing old; perhaps that’s why I don’t hear people talk about it much. In fact, I don’t hear much of anything these days. I noticed the ageing process kicking in around the age of 40. My hearing started to go and walking was becoming hard work and I’d find myself driving past Tesco, after work, instead of nipping in and buying that, much needed, bottle of red.

Anyone living with Cerebral Palsy will know that you are never in complete control of your body.  Forty nine years has taken its toll, in ways I couldn’t possibly have imagined. I can’t blame the hearing loss on CP though; that was too much head banging in the 80s, along with an over consumption of alcohol and head banging of a more painful nature. Unfortunately, my frequent falls now, don’t require alcohol and are usually remembered with immediate clarity.

Don’t get me wrong, I love my body with all her quirks. She has given me some great times and a wonderful son. We have been up volcanoes in the Solomon Islands and survived almost getting arrested at Singapore airport when my friend tried to hide cannabis in my walking frame. Now that got my heart racing. The dogs knew, they were all over me so it was lucky I had flushed the gear back in London.

I’ve never been good at compromise and now, my body has put her foot down. She has me hostage! She will not tolerate alcohol which, even in small quantities, sets my head and joints on fire. All physical activity must be kept to a minimum or I can forget getting anything else done that day. I try to comply but sometimes, I rebel. I haven’t told her that I plan to order a case of Bordeaux for my fiftieth birthday! I’m hoping that the cholesterol packed curry feast will keep her busy while I rehydrate.

Looking to the future, I am trying to get one step ahead of her. I’ve brought a hard hat to wear when the falls get too much. I no longer walk but bum shuffle downstairs. I buy pain killers like they’re about to be banned and have a secret stash just in case they actually are. I need them for the busy days and hangovers because I’m not ready to stop living on my terms.

I know that if I live long enough, I will lose my independence. Who doesn’t, at the end of life? And while this scares me, it also keeps me going. I don’t argue so much now or live in denial. I know when she is about to blow a gasket at me. But if I can just keep going; working through the pain and fatigue, taking one day at a time, then maybe, just maybe we can keep living disgracefully for many years to come.

Remembering Greyfriars Bus Station, Northampton

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They begin pulling you down today,
So many memories
Of waiting….
Huddled against the bitter wind
Whistling through a concrete cave
Cold and unforgiving
Always dark, neon light flickering above,
Even in the height of summer.
A new adventure awaited, as I climbed on to
The acrid diesel drenched deck
And found my way home.

I used the coach at Northampton for three years 1986 – 1989 when I was an undergraduate at Nene College. I would travel East back home to Norwich for the holidays or up North, to Bolton for the weekend, to visit my then boyfriend, who is now my husband.

Happy days!

Long dark underground tunnel lit by flourescent lightso

Photograph by Jonathan Calder, http://liberalengland.blogspot.co.uk
Used with thanks