Thursday, 28 April 2016

Quality of Life

How’s your life? 

Are you living on Quality Street or in Desperation Alley? 

Was it different last month? Last year? Ten years ago? Do you think it will be different in ten tears time? 

How exactly do we measure quality of life? Is it possible to measure the quality of life of someone else?

When we consider people with disabilities, in Emily’s case, with Down’s syndrome, it would be easy for some who don’t know her to question her quality of life. And of course this argument can be used in an attempt to justify termination of a baby with a disability. People like our old friend Richard Dawkins who I’m sure you’ll remember caused a stir a couple of years ago when he stated:

"If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down's baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child's own welfare." - Richard Dawkins
Thankfully, we don’t all have the morality of dear old Rich.

However, The Abortion Act 1967 states that provided a pregnancy has not exceeded its 24th week, an abortion may be carried out if:
  • continuing with the pregnancy would involve a greater risk to the woman's life than ending the pregnancy
  • continuing with the pregnancy would involve a greater risk of injury to the woman's physical or mental health than ending the pregnancy
  • continuing with the pregnancy would involve a greater risk to the physical or mental health of any of the woman's existing children
  • there is a significant risk that the baby would be born with a serious physical or mental disability

There are also a number of rarer situations when the law states an abortion may be carried out after 24 weeks. These include:
  • if it's necessary to save the woman's life
  • to prevent grave permanent injury to the physical or mental health of the pregnant woman
  • if there is substantial risk that the child would be born with serious physical or mental disabilities

So Down’s syndrome falls into this category – serious mental disability. Personally I think that it is way out of date and the narrative of the life of a person with Down’s syndrome is vastly different to 50 years ago, when they weren’t even legally entitled to an education!

The World Health Organisation (WHO) defines Quality of Life as an “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”.

So ask Emily what her perception of her life is. In fact ask anyone with Down’s syndrome and I think they’ll tell you that their life is pretty darn good. The difference between people with Down’s syndrome and the rest of us is that they actually show the world that they’re having a good time!

Emily loves being part of our family, our community, our church. She loves going to college. She loves having a part time job. She loves going to Zumba with her friend. She loves a gingerbread latte in Costa. She loves having the freedom to catch the bus on her own. She loves giving away some of her money every month to support a child orphan in Uganda - something she did at her own request after seeing an African Children's Choir. She voted in the last election for the party she believed promised to do the most to help people who had cancer. She cares. She loves. She has high expectations and aspirations.

So on the basis of the WHO description it is not possible to determine someone else’s quality of life as it is down to the individuals’ perception.

Consider this scenario, two babies born on the same day, Child A to an affluent middle class professional couple in suburbia, he has blonde hair blue eyes and perfect health. Child B has Down's syndrome. Her mother is a drug addict and B is immediately taken into care.

By now most people will have made a judgement about what those two babies quality of life will be.

However, it turns out A has no time given to him by his busy parents and he rebels, drops out of school, starts drinking, progresses on to drugs which leads to stealing, he loses his job and ends up in and out of prison all his life.

Meanwhile B is fostered and then adopted by loving parents who embrace her into their family, providing for her every step of the way. B goes on to get a good education and got a job in a hair salon. She's now living independently and in her spare time she’s on the speaking circuit, encouraging people of all abilities to make the most of every opportunity in life for you never know where those opportunities will lead.

I wonder which one would say they had a good quality of life. Not for us to judge though. Whilst in prison A repented of his past life spent his time teaching other inmates how to read and write. He’s happy helping others to improve their lives.

It’s not our job to judge others.

I’ll end with a children’s story, I think you’ll like. It encourages us to help others see the potential they have and the “beauty in the broken”.

Leaky Bucket story
There was once a man who lived on a hill and every day he had to go down to the river to collect water. It was a steep climb so to save time he took two buckets which he carried at each end of a pole which he held across his shoulders.

The bucket on the left was shiny and new, the one on the right was old and rusty with a few small holes. Every day the shiny bucket would still be full by the time the man arrived home, while the old rusty bucket was only half full.

The old rusty bucket was sad, “Time to get rid of me – I’m useless” he said.

The shiny, perfect bucket said to the man, “I keep all my water. You must be pleased with me”

(Please do remember this is a children's story and it's perfectly normal for buckets to talk!)

The man stopped, he looked at the two buckets, looked back at his feet and said to the shiny bucket, “You’re right! You do a great job, you do just what I need – I am well pleased with you!”

The shiny bucket smiled. However, the rusty bucket looked sad. “Rusty Bucket”, the man said. This was the moment the rusty bucket thought he was going to be thrown out. “Rusty bucket, every day I endure this is long walk down to the river and what seems like an even longer walk back. A while ago I realised you leaked and so I planted some seeds - if it wasn’t for you leaking I wouldn’t have all these flowers to look at and smell as I walk back. I am delighted with you!”

The rusty bucket looked down – the water which had leaked out of his holes had watered the ground and caused a beautiful pathway of flowers.

You see friends where some see only damage, uselessness and failure, others see wholeness, potential and success. It’s impossible to the measure quality of life in someone else. There is potential and value within all but sometimes we just need to wait for the flowers to grow. 

Saturday, 9 April 2016

I'm not a kid anymore

I wish I’d kept a diary or journal when our children were young. The internet didn’t exist then (how old do I sound!) so there was no blogging, no Instagram, Facebook or Twitter which could be used to capture a moment and record it for posterity. If we wanted to record something it was good old fashioned ink and paper and a camera with 24 shots per roll of film. Nobody took pictures of their dinner from a hundred different angles when you had no way to delete them!

So it’s no surprise that, having not been organised enough to keep a journal, I have forgotten so many stories about all three children until something happens or I see a photo which sparks a memory. That happened this week when I was reading the wonderful blog Downright Joy by the lovely Alison Morley. You should check it out after reading this.

Alison helped me to remember a story from when Emily was about seven or eight. James and Amy, friends from America had come to stay for a time. One day we were travelling up the M1 on our way home. This must have meant we’d been somewhere wild and gorgeous like the Peak District or somewhere exotic and expensive like Meadowhall shopping mall (because you’ve got to show Americans a shopping mall right?).

Over the years Emily has had a few different soft toys with which she has had a special relationship. Around this time The Tweenies were a big hit on TV. No I can’t remember their names, sorry. However, I can name you all of the firemen from Trumpton and tell you how Camberwick Green’s Windy Miller got his name…but that’s another story!

No, back at the turn of the century – there I go sounding all old again – Emily was into The Tweenies and she really liked Bella. Bella was the blue one, this I know because Emily had a Bella doll. She loved Bella and she came everywhere with us. It was never a good day when we couldn’t find Bella to come on a journey. Thankfully on this occasion, Bella had been able to join us…

(Was there a dog called Doodle? A big shaggy St Bernard type thing?...sorry for the interruption - that just came to me)

Anyway…Bella had been with us to Castleton or Dovedale, or perhaps House of Fraser, wherever we’d been I can't remember, but a good day had been had. Amy, our gregarious and ever so lovely American friend, was sat in the back seat chatting with Emily and Bella. They decided (I suspect Amy decided…) to wash Bella’s hair. I have no idea why Bella would need her hair washing in the car going home, especially as we were all out of water and shampoo which meant that this had to be done in the salon of imagination. However, it kept Emily entertained and that was all that mattered.

Of course when one has had one’s hair washed in the car and there’s no towel available, you need to improvise to get it dried. Amy was clever. She spotted we were doing 70 miles per hour and with the air being warm this time of year it could be the fastest hair drier in the world. She wound the window down a little and popped Bella’s head out, just far enough to ensure that her spiky yellow hair blew in the wind to help dry it off.

Disclaimer: Please, please don’t employ this hair drying method with your own children – even in the salon of imagination!

Amy then made the fatal mistake – this could be the one reason she never progressed to having her own salon – she passed Bella back to Emily while the window was still down a little. Emily, being Emily, decided she’d quite like a go at the hairdrying thing herself and proceeded to pop Bella’s head out of the window, closely followed by her arms, legs and body as she tumbled on to the tarmac which was already way down the road!

“Oh no!” shrieked Amy, putting her hands to her head, “I can’t believe she did that!”

The next turn off was a few miles up the road and it was getting dark. There was no way of going back to see if we could find Bella tonight so we headed home with Emily saying “Blew away…she blew away!”

Indeed she did.

The following morning I was up at first light on the Bella rescue mission. I jumped in the car and headed for the motorway. Having got there I scoured the northbound carriageway, whilst travelling south as slowly as I could get away with, trying to remember where we were when this happened. To my amazement I spotted something blue over on the other side, it was only half a mile from the next junction so I rounded the roundabout and headed north. Sue enough I had found Bella – she’d had the good sense to wait on the hard shoulder! I pulled up, fully aware that I was probably committing an offence by stopping for a non-emergency, opened the passenger door, leant out of the car and pulled Bella in.

I set off home, Bella strapped into the passenger seat for safety, with memories of Emily saying “blew away” and gesturing with her hand as though Bella just flew off into the air of her own accord.

I’ve just pulled Bella down from the loft and re-united her with Emily. Emily said “I don’t want her, I’m not a kid anymore” – it’s a bit like Toy Story 3 all over again – but do you know what I’m so proud, so pleased that Emily now sees herself as an adult. She doesn’t need the toys of her childhood, she needs empowering as a young woman to lead the life she wants. And that my friends, is the challenge we have. Those of us with children, whether they have Down's syndrome or not, whether they have any kind of learning disability or not, whether they have passed exams, graduated, learned life skills...or not, each will have dreams, ambitions, hopes for their life as an adult and we must be prepared to release them to be the person they want to be...just don't release them in the way Emily released Bella ok!!

The final irony…Emily is gaining some (ahem) paid work experience in a real hair salon – thankfully her hair drying methods have improved!

Wednesday, 6 April 2016

Turn, turn, turn

You may know a song by The Byrds called Turn, turn, turn. Actually, you’re probably all far too young to remember it unless you heard it on Pick of the Pops – ask your parents to sing it to you! (Ah, if only this were a Vlog I would sing it for you! Alas, you are spared!) It goes like this, “To everything (turn, turn, turn), there is a season (turn, turn, turn) and a time to every purpose under heaven”. It got to number 1 in America.

Ha! You're singing it, I can hear you!
The song was written way back in the 50s by Pete Seeger and is actually based on a Bible passage from the book of Ecclesiastes “There is a time for everything and a season for every activity under heaven, a time to be born and a time to die, a time to plant and a time to uproot”. It continues with more examples but later says “a time to be silent and a time to speak”.

I’ve not written for a while. It’s not that there hasn’t been anything to say – quite the opposite in fact – no, it’s that this has been a season of quiet; a time to be silent. Sometimes we need to have these times, not just to re-charge our batteries but to re-calibrate ourselves, make some adjustments, re-focus, step back, breathe, be refreshed, take a walk in the rain and remember that we’re alive!

So now, here I am writing again; a time to speak up. And it seems there’s much to speak up about when it comes to Emily and matters of Down’s syndrome generally. There’s so much happening in Emily’s life that it’s hard to keep up sometimes. Changes to college education, the Educational, Health and Care Plan, cuts to adult social care which has affected her ability to volunteer at a project she has been working at. Then there are the small matters of adult relationships and other “big people” stuff like how to deal with grief when people die (too much of that already this year). She does amazingly well to adapt to so many different situations and so many changes and challenges.

The world we live in is not at all kind to those who may be vulnerable, especially vulnerable adults. When your kids are small and in education there’s a statutory bubble of protection around them. It provides a framework for the here and now and the coming years, there’s support; strategy. In adulthood much of this is stripped away, leaving our young adults to be tossed around by the waves in a sea of apathy, rejection and dereliction of a duty of care by local authorities and central government.

So it’s time to speak up; time to make some noise, rattle some cages, demand some changes and try to remember to enjoy the journey. Any small victories are ours to share with others and with those who follow along this same path. In the words of George Bernard Shaw:

"This is the joy in life…being used for a purpose recognised by yourself as a mighty one…being a force of Nature instead of a feverish little clod of ailments and grievances complaining that the world will not devote itself to making you happy…I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It’s a sort of splendid torch which I’ve got to hold up for the moment and I want to make it burn as brightly as possible before handing it on to future generations.”