Many moons ago I was a children's nurse, deliberately choosing to work with children who had a variety of disabilities. I was inspired to do this aged 14, having started to volunteer as a one to one carer in a camp for children with disabilities.
I worked alongside a girl the same age as me who had cerebral palsy, needed help with all daily living needs. and communicated with facial expressions and moving her nose. She challenged me in how I viewed disability, showing me that it was not me, the hero, doing everything for her.
This was a strong friendship with mutual benefits, laughing and crying with someone who was intellectually and emotionally much stronger than I was. It didn't matter that I had to feed her, translate for her or anything else. She was my friend.
During my time in that camp, I cared for many children with a wide variety of disabilities. None of us were politically correct, we insulted each other, laughed at each other, and had wonderful nicknames for each other that people today would cringe at. My life is so much richer for knowing them, and in many cases, I am still in touch with them. I hope they are richer for knowing me too. Many had life-limiting illnesses and have since died. I remember them with a mixture of joy and sadness.
It was these young people who inspired me to do what I do today. Not in a patronising way, but one that makes me speak out as often as I can to say that these young people are worthy individuals, vital to the world, and without them we are much poorer. The fact that I too am now disabled is a bit of a fluke. I don't shout because of my own disability, I shout for others.
But I'm finding many problems. One is the fact that today, many of those children would have been aborted. Take the figures for Spina Bifida. Eighty per cent of all babies diagnosed with Spina Bifida before birth are aborted. The number of diagnoses are around 1 in 1,000. It doesn't take much to find the stories of the other 20% who were told they would never walk, but have; that would never live, but have survived; and many more stories of these children growing up to lead happy and productive lives. So why are parents bullied into considering terminations right up until full term?
The overall figures for those aborted due to disability have risen in the last year, but even more worryingly, these abortions have often been for minor disabilities and disfigurements. I have friends old and young with some of these conditions, and it fills me with horror that they could have been aborted just for being different.
Currently the abortion law says that 'terminations' can only happen after 24 weeks if "there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped". Some see this as meaning "if a child's disability is not compatible with life". This is also a category for terminations before 24 weeks.
And yet, today, we find ourselves in a position where children with a clubbed foot or a cleft lip can be aborted almost up to the point of birth. Neither of these conditions are life limiting, so what changed?
Since the new screening for Down Syndrome came in, abortions for this have risen hugely, with 656 recorded in the statistics for the last year. Parents are still reporting stories of being pressured to terminate the pregnancy with many depressing reasons for why they should do this. Again, what has changed?
A lot of it is attitude, some of it is fear, some is existing difficult circumstances meaning the pressure put on a parent to terminate is too great.
For some, it is due to what people perceive as 'quality of life', which is subjective at best. There are times people have said to me that they'd rather kill themselves than be like me. Charming! And yet my life is full and happy.
The reasons for these changed attitudes are many and complicated.
I for one am so pleased I was not aborted. As a child conceived because of rape, it was offered to my birth mum. She declined, and I'm thankful to be alive.
Kay Morgan-Gurr is Chair of Children Matter and Co-Founder of the Additional Needs Alliance, part of the Evangelical Alliance Council. For more, www.kaymorgangurr.com and on Twitter @kaymorgan_gurr
