Coffee with Liz from DSRF UK

The beauty of living in Cornwall is that lots of people pop down here for their holidays during the summer. That has recently begun to include online contacts and friends and I've been delighted that they want to give up a portion of their holiday to meet up in real life.

Elizabeth Corcoran who heads the charity Down Syndrome Research Foundation UK and I met up in our favourite café, along with Daddy Downs Side Up, Mia and Natty on Saturday morning. We have chatted online, it was Elizabeth who put me forward to give evidence in Westminster re the current Disability Abortion Law but we had never met, as she gave her evidence online and by post.

Elizabeth has a younger brother who has Down's Syndrome and her charity aims to channel funds into medical research to improve the lives of those with T21. The sad fact is that the majority of research into DS currently focusses on the testing and screening process. Elizabeth and her team would like to see that balance changed in favour of studies into preventing dementia, improving cognitive function, maintaining a healthy heart and so on.

Well, Liz was one of those ladies it was so easy to get on with. We chatted away about current and future projects, hopes and fears, family and work, supporting each other, oh, and of course managed to fit in the obligatory funny face photos, instigated by Natty who immediately fell in love with her.

Shame on you Collin Brewer

Shame on you Collin Brewer not shame on Cornwall.
In summary: a Local Councillor in Cornwall said (in the heat of the moment, when knackered and after a stroke that appently affects his temper) that children with disabilities SHOULD BE PUT DOWN.

I took a breath, raised my eyebrows and we all urged him to give up his post. 
Although many were furious, some even baying for blood, we all know people that say things they shouldn't from time to time. Poor bumbling buffoon we thought, so devoid of love and compassion in his life, so unaware of the wonders our children bring to our lives.

But embarrassing uncles saying things they shouldn't at weddings is one thing, a bigot with a microphone in his hand and in the public spotlight, weilding power, albeit in a small constituency in Cornwall is a dangerous thing. 

He and his wife entered a pub for a drink. Those present fell silent and everyone turned their backs. The majority in is town were shunning him.

The fact that he is an Independent candidate (and this is not about politics for a millisecond) means that he is aligned with no particular party and cannot be sacked.
But he did resign (under sufference and a very very hard hitting radio interview with Laurence Reed on BBC Radio Cornwall). 

We collectively breathed a sigh of relief, despite his reluctance to go he had seen sense at last. We could stop worrying about the riots that we feared might ignite, those turning up on his doorstep who were less forgiving than I.

He would surely disappear into the ether and lick his wounded pride...

Or would he?

Apparently 3 cards from wellwishers and a handful of local chums persuaded him to join a disability charity, work with local families to make amends, stand again as Councillor.

Now don't even begin to ask which 'well-we-do-the-same-with-our-cows' constituents voted for him (sadly I am quoting one gentleman) but he got voted in on Friday, winning the Wadebridge East seat by a gnat's whisker of 4 votes. 

There was a recount. There were boos from some present. The disbelief amongst fellow candidates, journalists and media was tangible.

I can't get angry, I have much bigger fish to fry, but I will play my part in seeing this fool removed from office. For he is embarrassing us here in Cornwall, the world convinced his attitude is 'just part of behind-the-times-thinking which we country bumpkins have down here', which is simple not true. 

The community here is Cornwall is nothing short of warm and supportive. Everyone looks out for each other and more importantly accepts each others quirks and differences. Here in Cornwall is truthfully the only place in the UK that no-one ever stares at Natty, then me as if to see how old I am, then back at her to see how 'affected she is by the condition'. 

The public at large are outraged by Brewer's arrogance and smugness upon re-election. He is still stating that he did nothing wrong. Perhaps we could forgive and move on if he said he was wrong and deeply sorry. I spent 10 minutes calming down a very angry postman on Friday, who knocked on the door to tell my husband and I how upset he and his wife are for families like ours, how angry is he that smug Brewer is back in.

Then there was the young window cleaner who told me he 'wanted to deck him'. I couldn't possibly comment on that.

The egg farmer thanked me for all I am doing to get Brewer out, because, it turns out his neice has Down's Syndrome and he said I spoke for the whole of his family, saying what they couldn't put into words for anger. 

And so you see, the entire cross section of Cornwall is pretty fed up with the bad press this guy is bringing us. Not to mention those who say they won't visit because they fear their children being treated badly on holiday here.

And to those who say 'it was only a throw away comment', 'he didn't mean it' you are agreeing that our children are second class citizens, that such comments don't matter because they have a disability, they are assumed not to have a voice. Well these comments do matter, as much as the terrible racist jokes that filled sitcoms in the 70s as I grew up. They were only 'having a laugh' back then too weren't they... 

Already 92% of all babies disgnosed as having Down's Syndrome during pregnancy are terminated by terrified parnets who recieve little or no support in what to expect. Yes Mr Brewer, put down. Do you begin to see why the comments are so real and so painful?

For those who think we campaigning for his removal are sh%t stirring, I guess you have it almost correct. Not stirring, but trying to remove the dirt from our shoes. Freshen up and move on. Sometimes you simply have to make a stand for what is right. When we shine light brighly into dark corners the shadows always become darker, and they usually protest. Read Outshining the Bigots here.

I've written a couple of open letters to Collin, which you can read here and here.

There's an ePetition to sign here.

I discovered the online complaints form for Cornwall County Council. Pop over and tick the first 5 boxes, mention Collin Brewer and his unacceptable comment, which was witnessed by Disability Cornwall and mention where you are from. I'm sure we can lodge more complaint than the 335 votes he received.

There's also a demonstration at County Hall in Truro on Wednesday morning if you want to peacefully show your feelings.

My interview with Pirate FM news is aired on Tuesday.

I've written to everyone I know at Westminster and every journalist I have ever worked with and every disability group I know worldwide.

We'll keep you posted.

Thank you for your support.


I leave you with Natty's thoughts on the matter Mr Brewer:

Downs Side Up is shortlisted in Inspire, Outstanding and Commentary sections of the 

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Readers' Stories Series - Mags Quennell

 

Meet Amber Rose.  Daddy's little Princess.  Mummy's Angel girl.  The BEST little sister in the whole to world to two BIG sisters and two BIG brothers.

 

I was fast approaching my 35th birthday.  Motherhood had eluded me for various reasons and I was just (only just) starting to get used to the idea that I may never be a mummy.  I had been having recurring kidney infections and was sent for Xrays.  After a long wait I finally went into the Xray room.  'When was your last period?'  asked the radiographer.  'About 6 weeks ago.' I said, 'but don't worry.'  She refused to do the Xray until I had a negative pregnancy test.   So I went home, annoyed.  Next day I bought a test, just to show her everything was fine.  It came out POSTIVE.  I fainted.

 

The pregnancy went as normal.  We didn't have any tests done as I was just too young for the routine ones, and as we told the midwife, It wouldn't make any difference anyway.

 

Our baby was due 14th July 2006.  

I woke up on the 27th June and thought 'Hang on.... something's happening.'  By midday I was in full labour and by 2.30 I was in the delivery room.  At 3.42 Amber Rose was born.  In a rush, the cord twice round her neck, jaundice, low weight, low blood pressure, low blood sugar, low oxygen, low muscle tone, very wrinkled and very quiet but with big dark eyes looking about and a head full of black hair.  We couldn't get her warm.  The paediatrician came in and examined Amber on the table in the corner of the room.  Alan was with him.  The doctor was looking at Amber's head, toes and hands. I could only just hear them. 

 

'What are you looking for?' asked Alan.

'I am looking for Down's syndrome.' said the doctor.

'Do you think our daughter has Down's syndrome?' asked Alan.

'Yes.' said the doctor, 'I think your daughter has Down's syndrome.'

 

Those two words floated across the room to where I was laid on the bed.  The world stopped........... a few seconds passed.....  the world started again.  Amber was wrapped up and brought over to me.  I looked down at her in my arms and said 'Hello, Amber Rose.  It doesn't make any difference....' and kissed her.

 

She had to go to intensive care.  A scan showed she had an AV septal defect - a hole in the heart.  Another examination showed her to have a coloboma of the iris of her right eye.  A big tear drop pupil.  Beautiful. 

 

She lay in her 'fish tank' under the UV.  Wires and probes attached all over her.  An oxygen mask by her head.  Tiny.  

 

After three days she was allowed out into Transitional Care.  And there we stayed for almost a month.  A month of heatwave, yet Amber was wrapped in a vest, babygrow, cardigan, mittens, socks and a wooly hat beneath 3 blankets on her cot!  She couldn't feed, so she had a tube down her nose into her stomach.

Come July 20th she WAS feeding from a bottle, and had been for a few days.  When the consultants came round I told them straight that we were going home.  That there was no reason to keep her in any longer.  They looked at me strangely, then smiled and said OK we could go home tomorrow!!!

 

And so began our journey.  Six and a half years later and our Amber, our Rose, is thriving.  She has so many friends at school I can't keep up.  She is lively, healthy (her heart fixed itself by 7 months old, leaving her only with a slight murmur), mischeivious, and curious.  Her smile brightens the room and our lives.

 

People ask me what we want for our daughter.  We want Amber to live a happy, healthy and productive life.  What does any parent want other than that?