Since learning that Miss Z’s recurrent lung problems are likely to be life limiting, we have had some difficult conversations with doctors. One thing that several doctors have asked me is what I think of Miss Z’s current quality of life.
I bristle at this question.
Perhaps because I think people often have very negative perceptions of the quality of life of people with disabilities. And these perceptions are often poorly informed.
Last year, in the midst of the furor over Richard Dawkins tweeting that it would be “immoral” to continue a pregnancy if there was a likelihood of Down Syndrome, I spent an afternoon reading the comments on Dawkin’s website debating his position. I’m not sure why I did it – I usually know better than to read online comments about these things.
But what shocked me was that there were so many people arguing that Dawkins was right because a child with Down Syndrome would face a lifetime of suffering.
A child with Down Syndrome, the consensus was, would have a poor quality of life – not to mention inflict a lifetime of stress and unhappiness on his or her parents.
My first thought after reading that was: obviously none of these people commenting have children with disabilities.
My second thought was: if they feel that strongly about the quality of life of a child with Down Syndrome, what on earth would they make of Miss Z?
Since then, I often suspect that many people believe that Miss Z doesn’t have a good life, which is why I hate it when people ask me about her quality of life.
How many times have you heard someone say things like “If I couldn’t walk, I wouldn’t want to live” or “without chocolate, my life wouldn’t be worth living” or “I would rather die than have to wear nappies!”.
Well, Miss Z doesn’t walk, she gets all her food through a feeding tube straight into her stomach, and she is incontinent.
So, what does that mean about others perceptions of her life?
Miss Z’s life will always be different and challenging. But that doesn’t mean she doesn’t have a good life. Nor does it mean that her life doesn’t have value. She is loved – and loves back. I have often been surprised at the love so many people have for Miss Z.
I’m regularly in situations where I have to compete for her because others want to hold her and give her a cuddle, too. And she loves cuddles. The girl lives and breathes affection and is rarely denied it.
She is active. Miss Z is busy most weeks. She goes to school. She swims. She has physiotherapy, occupational therapy and speech therapy. She enjoys walks along the river and drives in the car as well as having a good roll about at home. She participates in her community. She attends her sister’s Friday school assemblies and ‘sings’ along to the national anthem. She also loves going to her sister’s piano recitals (despite them being held in a very inaccessible-by-wheelchair venue) because she enjoys listening to music.
And Miss Z is a regular visitor at the gym with me – where she rolls on the floor and sings while watching me sweat. She is happy. No one who sees her splashing in the bath or wiggling and singing along to Katy Perry can doubt that she has joy in her life. Whenever we have been away from home – either at the hospital or away on holiday – she responds with unadulterated glee when she’s back home.
This isn’t to gloss over her medical issues – of which there are many – or the fact that a significant part of her day is spent dealing with those issues. Or that at times she is very unwell and unhappy. I also know that the doctors believe that these medical issues and her care will continue to take up larger and larger parts of her day.
But for now, she has a good quality of life.
It may not be the one I had envisioned for her when she was born or the one most people would choose, but that doesn’t make it bad. In her world, she is surrounded day and night by people who care for her and who will do anything to make sure she feels secure and loved.
There isn’t much better quality of life than that.
I just wish that more people understood.
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