They’re funny old things. Choices and opinions.
When issues arise about the Down’s syndrome community, people seem to expect that there is one coherent agreed view.
But life’s not like that.
We are a community. There are hundreds of thousands of people, people with DS, their parents, their siblings, their extended families, their friends. All of us are a part of this privileged world. A world where we have the ability to learn new skills and have new insight into ourselves.
But we all have different backgrounds, experiences, lives. It’s a diverse place where often we agree to disagree. In the same vein I wouldn’t expect my neighbour to think the same as me just because she lives on my street. Yet people seem to expect that the DS community has one voice, one opinion when nothing can be further from the truth.
Before Evie I thought that I knew it all. My mum often told me that I didn’t, I ignored her, arrogantly dismissing her view, thinking that I knew best. Invariably as ever she was right (Sorry Mum).
When Evie was born my views and morals were shaken. It’s not the first time that I’ve said this but should we have found out that Evie had Down’s syndrome whilst I was pregnant, we would have in all likelihood have opted for an abortion. I know myself well enough to know that’s what we would have done.
We would have been supported by family and friends in that decision.
I would have thought that I would have been making the right decision for me and my family. I knew nothing about Down’s syndrome. I’m embarrassed when I think back to my mistaken and incredibly naive beliefs and assumptions.
I thought people with Down’s syndrome were a burden. I couldn’t imagine that they could contribute to society. How terribly wrong I was. I used to view the world in terms of financial worth. I wasn’t alone in that view. This is what many people think which is why there is such a massive debate about the NIPT right now.
Evie has taught me so many things. She has made me question every belief I had, for the better. I’ve reassessed what is important in life and I no longer worship the almighty buck.
Since having Evie I have met many children with disabilities and their families. I have very good friends who have children with far more complex difficulties than she. Do I think that they shouldn’t be here? Those that may never sit up or walk?
No. I absolutely think they have a right to life. To this life. I know that most people who haven’t met these wonderful people wouldn’t understand, I wouldn’t have before. But these children are so beautiful, and they will turn into wonderful adults. Yes they will require full time care. That doesn’t stop their right to life.
Sometimes life throws things at us and we are faced with a challenge. How we answer that challenge is representative of who we are as people. Who do we want to be? Why are we so afraid and fearful of those who are different? Why do we feel that they do not deserve this life? Who gives us the right to make that choice?
Now not every person with Down’s syndrome is as able as Evie, others however are much more able than she. Likewise I’m not as able as some friends and others aren’t as able as me in areas. Such is life.
A lot of Evie’s difficulties don’t actually relate to Down’s syndrome at all but are attributable to her sensory processing disorder.
I’m not sure that Evie will ever be able to write, her fine motor skills are a real struggle for her.
Do I mind? Yes and no. Of course I would like her to write but she can use a computer and she’s fab on an iPad. That’ll do for us.
My priority is for Evie to be happy and content. I want her to try her absolute best. Funnily enough that is exactly what I want for her younger sister too.
In relation to the Non-invasive prenatal tests (NIPT) that are all over the news right now, I would have been 100% for it without consideration of its implications, pre-Evie. I would have thought that the world would have been better without people with Down’s syndrome in. I wouldn’t have been able to see their worth. Black and white viewpoint without seeing the grey.
I would have been wrong.
The DS community has many differing views amongst it unsurprisingly.
Some are totally against the NIPT. Believing that the test is tantamount to state sponsored eugenics. I can see their point.
Others are totally for the NIPT and don’t see what the issue is. Some say that they would like to not only know but would choose to have aborted their child. Whilst that view is not my own, it is their right to say that. I can understand why someone would feel that way…I’ve been there before.
Some are for the NIPT provided that women are given accurate, unbiased information – informed choice.
My personal view is for informed choice.
I believe that every pregnant lady should have information explaining that the NIPT is a voluntary test and what it tests for. Should that test come back with a positive result for Down’s syndrome or high chance…then that lady should be given full support.
Support about what Down’s syndrome actually means. To be given the opportunity to speak to families who have children with DS. Be given the real picture. Not a sugar coated viewpoint nor a horror story…just the reality. Is that too much to ask?
Yes, there can be difficulties, health issues but there is also much more than that. There is love, there is experience and education. There is something that is impossible to explain in a pamphlet.
That lady then has the right to make up her own mind about what she wants to do. She can have an amniocentesis if she wants. It’s her choice.
And if that lady chooses to continue with her pregnancy with or without an amniocentesis she needs the full unquestioning support of the medical profession. She doesn’t need to be questioned over and over, and be told that the child will be a burden. She needs no pressure. Good grief pregnancy is stressful enough at times without adding to it.
I could not personally abort my baby. I couldn’t. That is my choice, my opinion. Why? Having had Evie and seeing what she gives to the world, what she gives to me, I wouldn’t be without her for the world. Having lost her baby brother through still birth I could never choose to end a baby’s life. That is my choice for my own very personal reasons.
I can however understand why a family may choose to abort their baby when faced with a DS diagnosis. It isn’t the choice that I would make. I do believe that every child has a right to life, I suppose in many ways I am pro life BUT and it’s a huge BUT I know that everyone has a different view. And what’s more I respect their opinions.
I admit to being irritated how others can’t seem to accept that other people may have a different opinion. I also roll my eyes at the assumption that anyone who is pro-life is a religious zealot when it’s simply not the case. It’s terribly dismissive to try to minimise and ridicule someone’s viewpoint as being down to some religious belief. My pro-life leanings have nothing to do with religion, it’s about morals and values. My life experiences have brought me to my stance not because God or some lecturer told me to. (For the record I’m a Christian, a Christian who goes to church for weddings, christenings and funerals..like most of the Christians in the UK at a guess. Sorry God but you don’t majorly influence my decisions – my moral integrity and values do that, please don’t strike me down!)
I totally accept that not everyone will agree with me as is their right. They have their lives and their views.
They can make their own choices and be responsible for their own lives.
I’ve seen comments since the media around the forthcoming documentary “A World Without Down’s?” saying how the DS community is pro life. That’s not true.
There are individuals within the community who are of course. But you simply cannot say that every person within such a diverse and large community has the same viewpoint. It’s impossible for everyone to think the same. It’s ridiculous to try to box us all within such a statement.
I think we all need to be more accepting of each other. We need to listen. If you don’t share my view, that is your choice. My view is personal.
I won’t change my view because it’s not what another person wants me to think. I’m not ashamed of my viewpoint but I certainly am not arrogant enough to think that my view represents everyone.
I was taught to think for myself. Analyse, assess, research and most importantly listen. Debate my stance, try to argue my position but ultimately I can’t force anyone to change their minds. Anymore than anyone can force me to do what they want me to do.
We are individuals and capable of independent thought.
As individual and different as those with Down’s syndrome.