Posted in Digital Democracy, Media, Motherhood, Pembrokeshire Post, The Up-side of Down's, Uncategorized

A World Without Down’s?

I’m a big fan of Helen Fielding’s ‘Bridget Jones’s Diary’. When I first read it, some of it felt EXACTLY like my own diary – especially the daily stats on weight; food and alcohol consumption and generalised bitching about this squeeze or that. Well, OK Fielding’s diary was FUNNY!

Then the diaries were immortalised on screen. If my children ever wanted to know anything about my life in my 30s (obviously they never will and I’ll struggle to remember) they could just sit in front of the film. Best buy a very large box of popcorn.

I loved in particular Bridget’s best friend, Shazzer. I had a babysitter called Shazzer (well, she was really Sharon but I couldn’t help myself). I loved her rudeness: the film Shazzer I mean. Apparently Shazzer was based on a real life person – (Sharon McGuire) a friend of Fielding’s, who directed the films and described herself as ‘just like Shazzer only not as funny’. I know the feeling! It all added to the authenticity of the books and films – in particular the liberal use of the F word and the exact same mini hi-fi (seen in shots of Bridget’s bedroom) – that I had treated myself to post-divorce. This was MY room, MY bed, MY music and MY mini wood-housed hifi! Happy days. Pass the tissues.

And then we all went off and grew up. I headed west to ‘enjoy’ a thoroughly feral lifestyle in the wilds of Pembrokeshire. Amongst other achievements (including over-watering plants, frightening chickens and getting ropes stuck round boat rudders), I gave birth to a magnificent baby boy who gave us all a big surprise by having acquired an extra chromosome at the glorious moment of conception. Shebang!  Just when I thought there was something I could be good at Mother Nature said ‘ha ha smart arse – let’s see how you cope now!’

The calorie-counting wine sipping city life all seemed a long and distant memory. The years of no sleep and work-related stress was good training though. And then, Bridget’s Best Friend turned out to be an accomplished actor by the very sensible name of Sally Phillips (Sazza??) – and a fellow member of Future of Down’s. Whaaat??

Future of Down’s?? It’s a parent-powered Facebook group. Well, it started as a website-based parent of child with Down’s forum; but nobody bothered with forums once Facebook came along and the next thing we were clamouring for Rights and there were nearly 5,000 of us asking ‘What do we want?’ (to which the answer was ‘not sure yet!‘) and  ‘when do we want it?‘ ‘NOW!!! Erm not quite yet..not dressed…hang on!

Some of the mums ‘n’ dads in FoD then got together as a strategy group; well, I still enjoy writing strategy documents (it’s a guilty secret and zero calories). We looked at what it was exactly we wanted, and also looked outwards into the world our children are being raised into. We mainly want the little buggers to grow up, leave home and give us an empty room to put in a home gym system. Being a Special Needs parent doesn’t make us any less self-obsessed dontcha know?

In many, many ways, the world has become a much better place for people with DS and their families. We are contributing to that change and also awaiting the day our kids step forward and advocate for themselves. Being an optimist, I tend to focus on that. My parents think I’m in denial but that’s just a very long river in Egypt. Signs are good. There’s never been a more exciting time to have a child with Down’s.

The landscape for people living well with Down’s has changed so much since the original abortion law was enacted. In the 1960s children born with DS were routinely refused vital medical treatment, often taken from their families and institutionalised, denied any education – viewed as ‘ineducable’.

This was an unacceptable, unfounded attitude that thwarted and controlled those with Down’s  – with the inevitable sad outcomes for all concerned. Text books written in the mid 20th century stated that the life expectancy of a child born with DS was 12. Today the figure – 60 plus – is being constantly adjusted upwards and this is a clear indication of how our own attitudes have dramatically improved outcomes for people with DS.

Crucially, as the condition is being better understood, people with DS (when someone finally bothered to ask) report being happy with their lives.In 2011 the American Journal of Medical Genetics published groundbreaking research that challenged conventional wisdom about raising a child with Down syndrome (DS). Ninety-nine percent of parents said they loved their child with DS and 97 percent were proud of them; only 4 percent regretted having their child. 99 per cent of individuals with DS expressed they were happy with their lives and 97 percent ‘liked who they are’.

Life chances for children born today with DS are unrecognisable from the past. Along with access to healthcare and appropriate education, the UK Government is also committed to achieving equality for all disabled people by 2025, as set out in Improving the Life Chances of Disabled People. Employers taking on people with DS generally report great satisfaction from the experience. (With reference to the Down’s Syndrome Association’s WorkFit programme). The majority of people with learning difficulties report that they want a job.

People living with many disabilities that would have been viewed as ‘suffering’ and a ‘tragedy’ in the past live, by many key indicators, successful and fulfilling lives. Thanks to the Disability Discrimination Act and due in part, to the tenacity and skill of leading disabled people (such as those in the Paralympics and Special Olympics movements for example) society’s uptightness about disability is proving no barrier to many people leading fulfilling lives.

Minor adaptations, technology, increasing knowledge, a kinder more open attitude, all these are helping make our society more inclusive and gloriously diverse. The drive for more pre-natal disability tests (and unlimited access to terminations) seems to be at odds with that.

I’m not suggesting that access to testing should be limited and I don’t think that Sally’s film is either.  What is being challenged is the unquestioning acceptance that abortion is the ‘best’ option, or at least the ‘least worst’. The narrative given to parents at the time of offering testing and screening as reported by members of FoD is often alarmist and out-dated.

Mothers report on the forum that they felt frightened or intimidated into making a decision to abort – and are often questioned repeatedly if they choose not to.  It’s time we heard a more balanced narrative and in sharing her family’s experience Sally is assisting in achieving that.

No one can possibly know what is in store for new parents. But when we see the dramatically improved life chances, life expectancy and the undoubted contribution to society that people with Down’s make, it is right to ask the question – do we really want to keep on accepting that abortion should be the default position? And if it is, then where will it stop? And how will society view those with Down’s (and many other identifiable syndromes) in the future if the focus is on testing and terminations?

Now that tests are becoming more accurate, it is crucial that would-be parents hear the full story not just the opinion of the testing industry. Society seems to accept that one ought to go to extreme measures to actively avoid raising a child with Down’s.  This view is touted as the ‘morally correct’ position by some; but many people who have a child with DS utterly refute this and they also do need to be heard.

The Future of Down’s group is generally agreed that the current narrative about DS isn’t telling the whole story.  We’ve had some success at getting a different perspective presented to the media. We even arranged for a person with Down’s to contribute to a debate on the BBC’s flagship radio news programme ‘Today’ on Radio 4. Society’s attitude to Down’s was also challenged in a wonderful ‘Thought for the Day’ by John Bell. Questions have been asked in the House of Commons.

I’ve already explained how Social Media is saving Down’s Syndrome (See my previous blogpost). But it seems now to be facing an existential threat – some countries boast that they have a 100% rate of abortion for babies identified as having an extra 21st chromosome (or trisomy). In the UK a ‘new’ test (quite scarily known as NIPT – as in ‘nip’t in the bud’) promises to identify with ever increasing accuracy the presence of a trisomy. It’s all quite complicated – what’s known as an ethical and moral dilemma – but has inspired Sally Phillips to produce a documentary where she posed the question ‘A World Without Down’s?’

sally

Come the enlightened interesting documentary offering a new perspective on a complex subject: come the head-tapping condescending backlash. On Planet FoD we are all awaiting the official transmission of the documentary (BBC 2 9pm Oct 4- Weds). I’ve seen it.

Whilst I was so heartened to see Sally’s witty and intelligent grasp of the subject, I found myself sobbing silently listening to the mum who described on camera, having her baby aborted after a pre-natal diagnosis. She said they injected the baby’s heart with something to kill it. There was an abrupt cessation of foetal movement. I felt heartbroken for her, her destroyed baby and for us all.

I’m very proud of Sally for putting her media savvy and Shazzer swag into this decidedly unsexy , unHollywood subject. Sally is proud mum to Ollie – he’s 12 and he’s in the documentary. He also, like my boy, has Down’s.  Enlightened? Biased? Who will be the judge?

In answer to the critics of the programme  – look, if anyone wants to know what’s bad about DS all they have to do is ask Google. The default setting is ‘abort and try again’. So why are you so afraid to hear the counter-argument? This is not a ‘pro-life’ vs ‘pro-choice debate. It’s a ‘pro-choice based on a balanced presentation of the facts’ debate.

There are a few slebs now with children who have DS including Damon Hill, the late Brian Rix and Dominic Lawson but despite even their best efforts Down’s is still something most feel down about.

Generally, parents with a child with DS feel quite got-at: ‘Didn’t you know??’ comes the disempowering question. Well, screw that attitude. DS is a naturally-occurring addition and with undoubted challenges. There also comes the opportunity to live and experience life in a different less self-obsessed way. People with Down’s generally report being perfectly happy with their lot. Thanks for askin.

Bridget Jones’s baby didn’t have Down’s. Shazzer’s did. And that makes Bridget a very special aunty with someone other than herself to think about: which has got to be good news surely? A world without people with Down’s Syndrome is like Bridget without her famous big knickers: Less supportive, colder and no challenge.

 

 

 

 

 

 

 

 

 

 

 

 

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Author:

Surviving in the remote but glorious Pembrokeshire 'outback' isn't enough - I wanna thrive and feel happy to be alive....I hope my posts make you feel that way too :-)

One thought on “A World Without Down’s?

  1. Brilliant. Making the world more aware about Down’s Syndrome and encouraging discussion. Ms Hoss has a knack of writing blogs with just the right balance of information and humour.

    Like

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