Thursday, 30 April 2015

Bold assumption

I’ve not written for a while, it’s been a busy time in many ways, not least of which is thinking about Emily’s future. What happens after college? What does she want to do? Where does her future lie? Where is the support for whatever she wants to do? I’ve got to say that after Emily’s recent annual review at college I have many more questions than I had before and many more than I can list here. 

As we’re still in a process of discernment I don’t think it appropriate to divulge too much here and now but I will say this:

Forgive my bold assumption as we met around the table
I had this strange idea that the people there were able
To meet the needs of Emily, or at least you’d catch the vision
Of life when schoolings ended; her hopes and dreams; ambition

Forgive my disappointment when the dawn of truth awoke me
From my state of false-hope dreaming when your crass ignorance poked me
As a wounded bear defends her cub I had to bear my teeth
Through my blood-thirsty anger I hid the pain beneath

Forgive my crazy thinking that you cared about your students
I see your job is just a paycheck, but don’t you think it prudent
To have some self-respect; to dignify your position
Yet you wonder why parents around the world are preaching sedition

Forgive me as I take the reigns, you’ve really lost control
You’re in the world of special needs but you’ve lost sight of the goal
To allow each person the opportunity to reach their full potential
You squeeze square pegs into round holes, have you heard of differential?

Forgive my expectation that you’d heard of person-centred
Annual reviews are just your way of leaving me tormented
You’ve got no plan, no notes, no clue – just going through the motions
This is her life, her hopes, her dreams – don’t mess with her emotions

Forgive my bold assumption as we met around the table
I had this strange idea that the people there were able
To meet the needs of Emily, or at least you’d catch the vision
Of life when schoolings ended; her hopes and dreams; ambition


Tuesday, 7 April 2015

A Convenient Lie

I loved Down’s Syndrome Awareness Week this year and in particular World Down Syndrome Day on 21st March. It was fantastic to see so much positive awareness about Down’s syndrome across so many social media channels, in print and on television. The Empire State Building in New York City was illuminated in honour of World Down Syndrome Day, as was the Millennium Bridge in Gateshead, Blackpool Tower, CN Tower, Toronto, Canada as well as the homes of the Governors of New Jersey and North Carolina, USA, to name but a few.

There were amazing stories of what people with Down’s syndrome can do, wonderful videos we all watched and cried over probably, we read blogs and nodded and agreed and showed our support. And wasn’t it fantastic to see Prince Harry and some of the England Rugby Union Squad showing their support by joining thousands of people all over the world rocking their “lots of socks”!

What a buzz – we’re making progress at last right?

Yet all through that wonderful week something was bothering me. I sensed an elephant in the room. It was an elephant which didn’t crop up during that week, not that I saw anyway, yet it was the one thing which I really wanted to shout and scream about; the “abortion” elephant.

Over the last week or so there has been media coverage regarding a new non-invasive test for Down’s syndrome which is particularly accurate. It is being hailed as a huge step forward and will no doubt see a reduction in the number of live births of a baby with Down’s syndrome to such an extent that it could be all but eradicated.

Switch off the lights at the Empire State Building, those illuminations are not needed anymore. Prince Harry please remove those socks, never to wear them again. Science has found a way to eradicate Down’s syndrome so society can breathe a huge sigh of relief, the scourge of Down’s syndrome has finally been defeated and everyone can go about their business, we’ll consign Trisomy 21 to the history books along with smallpox, dinosaurs and Hitler!

Yet thousands of us, tens of thousands, parents, families, carers, know that people with Down’s syndrome are people first; not a label, not a condition, not a genetic mutation – people. If we were to let nature run its course without intervention there would, no doubt, be many thousands of people born in the future with an additional copy of chromosome 21 and they would get as much from life as the people we know and the people we celebrated during Down’s Syndrome Awareness Week. People. Like you. Like me.

Oh but the scientists tell us they’re not people until they’re born. Until then they’re just a foetus and that means we can do anything we like with them. They have no rights. It is better to rid the earth of people with disabilities. Well excuse me, if this were to be tried in court, I could call thousands of people who would testify otherwise. People who, if they had known, may well have considered a termination rather than proceed with their pregnancy. But people who now shudder at that thought. People who say they are better people because of what they have been through. People who have given more to society because of having a child with Down’s syndrome. Oh, and of course, let us not forget all the people with Down’s syndrome themselves. Yes those people who one day took a breath of air and sucked in their human rights.

Yet even now 90% of unborn babies (yes babies) detected in the womb to have Down’s syndrome never draw that first breath. Why?

The answer is not as simple as the parents, or the mother, decided to terminate the pregnancy, though obviously they did. But the decision is based upon pressure and bullying and an unbalanced and biased argument. In fact, often not even an argument, but an assumption that a termination is the only option. I don’t blame any parent for making the decisions they do. I respect their decision but it HAS to be based on the truth and not a lie and right now I do not believe that is the case. By not educating the general public, and scared parents, about just how amazing people with Down’s syndrome are somebody somewhere retains the power to eradicate Down’s syndrome.

So the elephant in the room for me, or perhaps the (extinct) woolly mammoth in the room would be more appropriate in the circumstances, is where is this pressure to eradicate Down’s syndrome coming from?

Is it coming from the scientists? Are they pressurising the medical profession somehow to use this knowledge in such a way that it sates their desire to push the boundaries of the known world?

Is it coming from government? Is it a desire to reduce the financial burden to the welfare state of people with disabilities?

Is it from within the medical profession itself? Doctors, consultants, nurses, midwives? Is there an inherent desire to play God, not just healing the sick but deciding who should live and who should die? I love the NHS and have friends who work there. I don’t want to alienate anyone but I do want to understand how this all works. Who is pulling the strings? Whose tune are we all dancing to? Whose agenda are we following? Talk to me. Let me know.

Or is it something else? Is it coming from somewhere else? If so, where? Who? Why?

I confess I do not know the answer. But somebody does. Whoever you are I say to you, if you’re going to play God with our lives then make yourself known to us. Make yourself or yourselves known to ME! I want to meet you. I want to understand your motives; to understand just what drives your sick, indulgent, deluded fantasy. It seems to me that what you are doing is similar to what the Nazis were doing during the Second World War.

Come out, come out wherever you are!

You see friends, science will not stop at Down’s syndrome. Oh you can bet right now that somewhere in some laboratory there are people working hard at decoding other “disabilities”. They are not there yet but when they find a way of detecting blindness, deafness, autistic spectrum disorder (yes, these may not be caused by the presence or otherwise of a chromosome but that won’t stop them) or any other disability, there will be the same pressure exerted to terminate. Unfortunately for people with Down’s syndrome, the decoding of the syndrome has given scientists something to play with.

However, just because someone invented a gun, doesn’t mean we have to use it to kill people. Likewise, having the science to detect Down’s syndrome does not mean that we should use it to kill unborn babies, just because we can. As with all aspects of our lives we must balance our understanding and our knowledge with our actions.

People with Down’s syndrome have had a raw deal. They were not legally obliged to an education until the early 1970s and having had a daughter with Down’s syndrome in the education system since 1996 I can categorically confirm that our society continues to fail people with Down’s syndrome by not meeting their needs adequately. All of this means that we have not seen the best of people with Down’s syndrome yet! But over the past 20 years we have seen people with Down’s syndrome make huge strides in qualifications, jobs, independence, relationships – pretty much everything the rest of us do. So why have they been demonised? Because there are too many people who still relate to people with Down’s syndrome as they were before they were allowed an education.

I have friends with a child with Down’s syndrome who will say until their very last breath leaves their body, that having that child, yes that child with Down’s syndrome, has made them a better person and they would not choose an alternative way of living even if they could. And I stand alongside them in this.

When will these people who have set themselves up as a god realise that people with Down’s syndrome make a huge contribution to society? When will they realise that every life is valuable and worth far more than any of us see from the limited perspective of a man-made label?

So whoever you are, show yourself. Stop hiding, you coward.

But you won’t. You can’t. You dare not admit that you might, just might, be wrong. So instead of taking an opportunity to change the world and face up to an uncomfortable truth you will continue to sacrifice the innocent and hide behind a convenient lie.

Saturday, 4 April 2015

Easter Lambs

It was a rare weekend away but where to go? Everything inside me wanted to head for the coast; for the sound of the waves crashing on the shore, for the wind to blow through my hair (well, ok, for the wind to blow by my head, about the place where my hair used to be, if you want to be pedantic about such things) - it's invigorating all the same! I love the coast, being there really does restore my soul, although I am a bit of a snob and it has to be rugged coastline, somewhere like North Cornwall, South-West Wales or the West coast of Scotland (other coastlines are available, please see your nearest tourist information centre for details).

However, with driving rain and possible snow forecast we decided that we would stay inland. Shropshire. We’ve never really explored Shropshire so we booked onto a farm for two nights B&B. I was working on the premise that if it was really boring Emily would at least enjoy saying hello to some animals every morning!

Well the weather was atrocious for most of our time away, a strong wind and horizontal rain for the most part. However, being on the farm worked a treat. It was more a smallholding than a farm; sheep, goats, horses, donkeys, pigs, dogs, geese, chickens – all that was missing was Old Macdonald!

We were given a tour of the livestock and Emily even got to give a backrub to Harriet, a very expectant ewe. Nick, our host, told us that Harriet really liked a good back rub and so Emily set about giving her the best back rub a Yorkshire girl could offer. We then said hello to Victor the horse, Charlie the goat and several other new friends before making our way to the pub where Emily downed two halves of shandy without coming up for air. 

We discovered that the pub had been at risk of closure so the villagers got together and formed a co-operative as it was a real hub of the local community. Everybody knew everyone – it was a bit like sitting on someone else’s settee but not at all strange – it was a lovely friendly atmosphere – as far away from Wetherspoons as you could possibly be. There was a genuine old-fashioned tap room where farmers were playing darts and when the fire alarm went off due to smoke from the kitchen all that happened was the kitchen door was slammed shut with someone's foot and the barmaid came running to waft the smoke away from the alarm with a bar towel and then opened the front door for a bit of ventilation. How refreshing! It was just like being at home! You got the feeling that Shropshire was a bit like going back in time to a time when people were civil to one another, cared for one another and created genuine community. I liked it. A lot!

After steak and chips we staggered back up the pitch-black lane with only a wind-up torch for navigation, stumbled into our lodgings and bedded down for the night. With no internet or TV, we were asleep by 10.30pm. Bliss.

As we arrived for breakfast the next morning we were informed that one of the sheep had given birth to two lambs that morning and that another was likely to deliver shortly and that we could go and look (after scoffing our full English obviously!).

We entered the barn as a lamb had just been born – the first for new mum Harriet! As we stopped we looked down and another was born, quickly followed by a third. Nick was giving us a running commentary through it all – it was like being on Countryfile! Just as I was looking round for John Craven, Harriet surprised us all with a fourth lamb! This was a first for Nick. He’d been doing this for 8 years and had never had four lambs from one ewe before. We all decided that it must have been Emily’s back rub the previous day that did the trick which Emily was absolutely delighted about.

The following day, just before we left, Nick asked Emily to think of four names for Harriet’s lambs – two boys and two girls. Without a second thought Emily declared, “Frank - you know Frank from church with the ginger beard, Thomas - Sir Thomas - the one who married Kate (we think this may be William but that's between you and I), Laura (after her big sister) and Noelle (one of Laura's friends from America and a fellow bridesmaid with Emily this time last year)”. We then went up to the barn to work out which was which before saying our goodbyes and heading on our way home.

So if you live or pass through Shropshire please do give a wave to Harriet, Frank, Thomas, Laura and Noelle - some of Emily's newest friends.

For this reason alone, we won’t be eating lamb this Easter!

Happy Easter!