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 Personally I think that it is way out of date and the narrative of the life of a person with Down’s syndrome is vastly different to 50 years ago, when they weren’t even legally entitled to an education!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

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