Society is down on Down’s

Sally Phillips’s  documentary for the BBC about the challenges and joys of raising her son with Down’s Syndrome was simply brilliant. In her words “I was expecting tragedy but what i got was comedy” that line perfectly sums up her family life and the entire documentary. The documentary looks at the increasing ability for screening foetuses for Down’s Syndrome earlier in pregnancy with more accurate results. The odds of having a baby with Down’s Syndrome are higher the older you are when you get pregnant and screening is offered as pretty standard practice to expectant mothers, especially those post 30 years old at conception.

4221396001_4051350406001_jamieWith Down’s people achieving more than ever before by becoming tv actors in mainstream soaps and movies, models on the catwalk etc. One would be almost forgiven for believing that we are now all accepting and encouraging but the truth is we are far from.

What is so bad about Down’s Syndrome?

There are around 40,000 downs people in the UK right now with Down’s Syndrome. Down’s Syndrome is a genetic disorder in which chromosome 21 (of the 26 that make us human) is copied. This genetic mutation is what causes the syndrome and from that a range of physical and mental differences. Until 1970 children with Down’s weren’t aloud to be educated and especially not in mainstream schools but nowadays it is common place in the UK for them to be assimilated into state schools as soon as possible. The arguments around if children with Down’s Syndrome should be taught in mainstream schools has been around for some time. Many studies have been done into accessing the best way to teach children with downs and it has been agreed that this is in a more visual way – we don’t discriminate against varied learning styles in none Down’s children so I personally feel that when it comes down to educating children the best person to make that call on what suits the needs of a child is the parents (or if politically correct, Primary Care Giver) and I think that educational facilities like schools and government bodies should listen to that.

A World Without Down’s Syndrome?

What can pregnancy screening really tell us? Would it make you love your child any less? Genetically, all bar one chromosome, they are a copy of you, yo

The ‘right’ or ‘wrong’ decision is subjective to what works for you!

u make them and without a little bit of both parents the miracle wouldn’t happen but some families see a Down’s diagnosis as ‘intolerable’ or ‘the worse thing that could ever happen’ one story in the press recently from a mother said “had i had a prenatal diagnosis, I would have obtained an abortion“. This comment is what we see time and time again. For the record I am very pro-choice but I don’t consider Down’s Syndrome as a reason in which to abort. I have never been in the position to make that call but to me early abortion or the morning after pill prevents babies before they become one. There is no excuse to get pregnant these days, and it happens subsequent to rape there are ways and means.

Making the call to abort a child must be amongst one of the hardest decisions to make in anyones life. The question I feel we need to start asking now in this case is; Can a positive result help you prepare for parenthood of a Down’s  Syndrome child or help you avoid the ‘burden’ completely? Screening for Down’s was introduced 30 years ago with no discussion or debate and now new screening carries less risk and can help to detect it earlier. Perhaps its the way in which we think of screening. Maybe its even down to the words we use.

Termination has gone up and according to the documentary 9/10 UK women terminate with a positive diagnosis. We will never know the exact reasons for this but it is believed that the pre-conceived perceptions of the condition, the stigma in society and the lack of education are just some of the reasons. Down’s Syndrome is still classed as a sever disability and babies can be terminated right up to birth…you read that right – birth. As late as 40 weeks can see the justification to abort a child if positively diagnosed with Down’s Syndrome or other sever disabilities.

In Iceland 100% of Down’s diagnosis end in termination. This has apparently been going on for quite some time now and has left very few Down’s people in the entire country.

Imagine if you had to justify your existence?

Icelandic photographer Sigga Ella wanted to show that people with Down syndrome are more than a chromosomal abnormality. They are diverse and they’re unique, just like everyone else in the world.

Halldora is an Icelandic woman with Down Syndrome. She spoke out about the struggles of being a part of the minority in Iceland and her fears of being hounded alive due to societies perceptions and the eradication of other people born like her. Bi-lingual, eloquently spoken and fantastically intelligent Helldora is breaking all the preconceptions and norms of her home county. Go Girl!

In the Netherlands over an 11 year period 1997-2007 the prevalence of Down’s Syndrome births had not really changed. The decision making and testing for the syndrome didn’t seem to have much effect on the abortion rates there and one cant help but question is that because their society is more accepting and doesn’t see the diagnosis and a life sentence?

Why is downs syndrome the only disability we find acceptable to terminate?

Is Down’s Syndrome a type of person or a disease? Thats what it comes down to. Screening like this in my view simply paves the way for Selective Breeding, and one cant help but ask what comes next? Abortion based on gender? Catalogue shopping for your perfect child?

For me the problem starts with society. We must care for and accept all abilities and disabilities including Down’s Syndrome as just another type of human being who has the same rights as anyone else. Parents shouldn’t have to make a decision to abort their child based on the f14645e7518ba862f794f3efd14b0267fact that they don’t have societies support to future proof their child. It is impossible to detect if a person will develop Alzheimers as they grow old but we know society is there to help them live with it. If we can detect Down’s Syndrome will we find a way to detect growth difficulties and eradicate dwarfism? Downs Syndrome is not a disease, they are people who happen to be a little bit different. For me, I believe that society should not be able to dictate the value we put on human life based on the number of chromosomes.

You can never know just how your child will be affected, you don’t know what you will be faced with but with any child you can’t see the future. How do you ever know what greatness your child could achieve.

Not everyone with Down’s is high achieving but everyone with Down’s is a human.

What do we value? Who will we end up leaving behind if science gets us further away from humanity? Humanity is most visible in the imperfections of our lives and so much love can help anybody to thrive regardless of genetic makeup.

Sally’s documentary is heart warming, infuriating, emotional and eye opening. Her son Olly is a credit to her and her family and I recommend to anyone who can watch it to do so. Society needs to learn more and be better.

Sally and Olly

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