“To screen or not?”

So unless you been offgrid, I’m sure you’ll have heard about, and possibly seen the programme “A World Without Down’s Syndrome”. I watched it tonight, and it really does make you think, not just about how far we have come in being able to eradicate one group of people, but that of many through a simple test during pregnancy. Where do we stop at, epilepsy, autism, cystic fibostic, disformation, blindness, deafness and so on?

I recall many years ago whilst at school having a discussion about the ethics of terminating a pregnancy because of a disability. I vividally recall one girl saying she would get rid of any that weren’t perfect. I asked if she has been my mother, if she had known I was deaf would she terminate me and she replied yes. That stung, so imagine now you are a person with Downs being told that there is a test and that if born today there a high chance they would be terminated. No exaggeration here, it’s already happening like in Iceland where’s there’s been 100%  uptake on terminatation on a positive dignostic of Downs in pregnancy.

I’m not naive, not to understand the full picture of what it is like to be a person with a disability, or to be a carer. My job is one where I assess, and provide support for children with disabilities and their families. They often have it rough, struggle to fight to get choices and options that the rest of the world takes for granted. But one thing all these families have in common, is joy in their child. They love them with such passion, and seek out the positives, even when the world throws shit at them.

Sally Phillips got it spot on in the programme, when she talked about, “If we have a society that is unable to care for people, then the problem is not the person.” 

People should have choices, that I totally agree with. However when given results, their choices should be balanced in information and not one sided. People cannot make a full informed choice if only given the “doom and gloom” picture. My parents were told I would never talk, or achieve much in life. Funny that, I can talk the hindleg off a donkey, and I’m fairly certain that I’ve got a fair few academic credits to my name!

If you’ve not seen this programme, I would urge you to watch it.  If you don’t actually know much about a condition or disability, don’t jump to an opinion unless you’ve actually bothered to find out more, and have actually spent time with those with the condition/disability.

Mostly I would urge you to think about what the ramifications could be for future generations if we start screening to eradicate what isn’t seen as “healthy” or “normal”, because one day whatever imperfections you have, may be seen as something we need rid of from society. 

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